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					                                                                                                                                                             FAQ's Diagnosing Lupus

                         Questions                                                                                     Answers                                                                         Links                              Links                  Links
                                                                 There is not a single diagnostic test for systemic lupus. A variety of laboratory tests are used to detect physical
                                                                 changes or conditions in your body that can occur with lupus. Each test result adds more information to the
Is there a test for systemic lupus?                              picture your doctor is forming of your illness.                                                                            LFA Web Site: Diagnosing Lupus   LFA Web Site: Understanding Lupus


                                                                 It is difficult for a number of reasons:
                                                                 • Systemic lupus is a multi-system disease, and before a multi-system disease can be diagnosed, there have to be
                                                                 symptoms in many parts of the body and lab work that supports the presence of a multi-system disease.
                                                                 • Systemic lupus is also difficult to diagnose because it is a disease that does not typically develop rapidly, but
                                                                 rather develops slowly and evolves over time. Symptoms come and go and it generally takes time to gradually
                                                                 accumulate enough symptoms to indicate that a multi-system disease is present. The
                                                                 • Systemic lupus is known as a Great Imitator because it mimics so many other diseases and conditions.
                                                                 • Systemic lupus is difficult to diagnose because there is no single diagnostic test for lupus. In fact, many people
                                                                 may have positive lupus tests-particularly the anti-nuclear antibody test-and yet NOT have the disease.
Why is systemic lupus so difficult to diagnosis?                                                                                                                                            LFA Web Site: Diagnosing Lupus   LFA Web Site: Understanding Lupus
                                                                 A doctor who is considering the possibility of lupus will look for signs of inflammation. The signs of
                                                                 inflammation are pain, heat, redness, swelling, and loss of function at a particular place in the body.
                                                                 Inflammation can occur on the inside of your body (your kidneys or heart, for example), on the outside (your
                                                                 skin), or both.

                                                                 However, there are many challenges in confirming that a person has lupus and not some other disease. Lupus is
                                                                 known as “the great imitator,” because its symptoms mimic many other illnesses. Also, lupus symptoms can be
                                                                 unclear, can come and go, and can change.
                                                                 Therefore, a lupus diagnosis is made by a careful review of:

                                                                 • your current symptoms
                                                                 • your laboratory test results
                                                                 • your medical history
                                                                 • the medical history of your close family members (grandparents, parents, brothers and sisters, aunts, uncles,
                                                                 cousins)

                                                                 All of this information may be necessary for a doctor to make a diagnosis of lupus because, for a number of
                                                                 reasons, laboratory tests alone cannot give a definite “yes” or “no” answer.

                                                                 • No single laboratory test can determine whether a person has lupus.
                                                                 • Test results that suggest lupus can be due to other illnesses, or can even be seen in healthy people.
                                                                 • A test result may be positive one time and negative another time.
                                                                 • Different laboratories may produce different test results.
How is systemic lupus diagnosed?                                                                                                                                                            LFA Web Site: Diagnosing Lupus   LFA Web Site: Understanding Lupus
                                                                 Because lupus tends to develop slowly and evolve gradually over time, awaiting a diagnosis can be like waiting
                                                                 for a Polaroid picture to develop. If you are seen by a doctor at a point in time when only one or two criteria are
                                                                 satisfied, it is like looking at a picture that is only one-quarter or half-way developed. No one looking at that
                                                                 picture can accurately identify what it is. Nor can they predict if it will develop at all or what it will develop into,
                                                                 or how long it will be before it is developed to the point where it's identifiable. Just as there is no good way to
                                                                 speed-up the development of a Polaroid, there is no way to hurry-up the diagnosis of lupus.

                                                                 The length of time it takes before lupus can be diagnosed is highly variable; it may take weeks, months or years;
I am afraid I might have lupus and my doctor is going to         three years is not an uncommon length of time for many people to have symptoms before being diagnosed. In
miss something and end up diagnosing me with lupus too           some cases, it can take as long as 10 years before enough evidence has accumulated to indicate that it is lupus.
late. If I have it, I want to be diagnosed as early as           However, generally a doctor has a pretty good idea, though s/he may not be certain, that a person does or does
possible. How can I make sure I am diagnosed earlier             not have SLE. The important thing is to learn the signs and symptoms of lupus and if you develop something
rather than later?                                               new, let your doctor know so s/he can determine if you have yet satisfied enough criteria to be diagnosed.                 LFA Web Site: Diagnosing Lupus   LFA Web Site: Understanding Lupus
My doctor suspects I have lupus, but hasn't diagnosed me
with it yet. I have a lot of joint pain in my hands and knees.
Can anything be prescribed to give me some relief, or do I
have to wait until I have a definite diagnosis before they
can treat me?                                                    Sometimes, a trial of lupus medications is helpful, so discuss this with your doctor.
                                                                 The screening test for lupus is called the ANA (antinuclear antibody). All lab tests have normal values. If a test
                                                                 result comes back and the value is at the upper limit of normal, this is often referred to as being on the border or
                                                                 borderline. These results are often very difficult to interpret; and the assessment of its importance is dependent
My Doctor said my lupus test came back "borderline               on meeting other criterion. It is likely that a borderline positive ANA assumes more importance if other criteria
positive." What does this mean?                                  are also present.
                                                                                                                                                            FAQ's Diagnosing Lupus
                                                               In general the diagnosis of lupus is based off of a combination of physical symptoms and laboratory results. It is
                                                               usually a diagnosis that evolves over time either towards more certainty or to the conclusion that the person does not
                                                               have lupus. People can have bouts of autoimmunity with in elevated ANA result that are brief (sometimes associated
                                                               with a viral infection) and then after it goes away and does not come back for a while it is reasonable to conclude that
                                                               the person is unlikely to have systemic lupus. Some things to know about diagnosing lupus:

                                                               • First and foremost, lupus cannot be diagnosed solely on lab work.

                                                               • Secondly, positive lab tests for lupus can come and go over time and that is quite common. When they come and go
                                                               it is less likely that the person will end up with a diagnosis of systemic lupus although that is still possible.

                                                               • Thirdly, it is very common to get somewhat different results at different labs. However if a person has a very strong
                                                               case of lupus, it is likely that the ANA will be positive at most laboratories most of the time and that other
                                                               autoantibodies will be present as well. 97% of those with lupus have a positive ANA test.

                                                               Antibodies to double-stranded DNA (anti-dsDNA) are antibodies that attack the DNA—the genetic material—inside the
                                                               cell nucleus. Anti-dsDNA antibodies are found in half of the people with lupus and antibodies to the Sm antigen are
                                                               found in about 30 – 40 percent of people with lupus, but lupus can still be present even if these antibodies are not
How can an ANA come back positive one time and                 detected. Erythrocyte sedimentation rate (ESR or “sed” rate) is another test for inflammation. It measures the amount
negative the next? The doctor said I do not have lupus         of a protein that makes the red blood cells clump together. The sed rate is usually high in people with active lupus, but
because of this.                                               it can also be high due to other reasons, such as an infection.                                                             LFA Web Site: Diagnosing Lupus   LFA Web Site: Understanding Lupus
                                                           Connective tissue includes joints, tendons, cartilage, collagen, muscles and skin. There are a number of
I was told my ANA was positive, but I don't have lupus.    connective tissue diseases; rheumatoid arthritis, scleroderma, Sjogren's syndrome, Raynaud's phenomenon,
My Doctor thinks I have a connective tissue disease. What vasculitis, polymyositis and dermatomyositis. It is not uncommon for a person to have symptoms that indicate a
does this mean?                                            connective tissue disease, but not enough symptoms to clearly specify a particular disease.
                                                           Approximately 97% of people with systemic lupus have a positive ANA. Only a small percentage have a
                                                           negative ANA, and many of those have other antibodies detected in their blood (antiphospholipid antibodies,
I was told my ANA was negative, and I don't have lupus. Is anti-Ro, anti-SSA). Sometimes the ANA will convert from positive to negative following administration of
it possible to have lupus with a negative ANA?             steroids, cytotoxic medications or uremia (kidney failure).
                                                           If multiple criteria are present simultaneously, the diagnosis may be made by any physician (Family Practitioner,
                                                           Internist, or Pediatrician). If however, as is often the case, symptoms develop gradually over time, the diagnosis
What kind of Doctor can diagnose systemic lupus?           may not be as obvious and consultation with a rheumatologist may be needed.
                                                           If you are indeed developing lupus, there is no known way of arresting it. You can, however, be an active
                                                           participant in your well being by:
                                                           • learning as much as you can about lupus so if you develop further symptoms, you will recognize them and
My doctor suspects that I may be developing lupus, but I notify your doctor,
don't satisfy enough criteria to be diagnosed. Is there    • eating a well balanced diet,
anything I can do to slow its development or prevent it    • managing stress more effectively, and
from occurring?                                            • following your doctor's advice                                                                                                LFA Web Site: Diagnosing Lupus   LFA Web Site: Understanding Lupus
                                                           Patients with positive ANA's and muscle and joint pain do not necessarily have lupus. Fibromyalgia, which is
                                                           also common in women, sometimes explains the widespread pain.

                                                          Fibromyalgia Network,
                                                          P.O. Box 31750
I was told my ANA was positive and I have a lot of pain,  Tucson, AZ 85751-1750,
but my doctor thinks I have fibromyalgia and not lupus.   1-800-853-2929 or (520) 290-5508
What does this mean?                                      http://www.fmnetnews.com/                                                                                                             Fibromyalgia Network
                                                          There is no one single recognized center of excellence for the treatment and diagnosis of lupus in the United
                                                          States today. The Lupus Foundation of America has no mechanism by which it can rate either hospitals or
                                                          physicians. The general recommendation is to find a physician that is affiliated with a medical school -a
                                                          university hospital for example. These health care institutions may have faculty on staff who are involved in
                                                          lupus research, and are generally the most up-to-date on the latest advances in diagnosis and treatment of lupus.
Where is the BEST place to go for diagnosis and treatment These are generally regarded as very good places to go for the diagnosis and treatment of lupus. Certainly the
of lupus?                                                 health care institutions with established reputations fit this description.
                                                                                                                                                        FAQ's General Lupus Information


                           Question                                                                          Answer                                                                       Links                              Links                               Links
                                                  Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the
                                                  body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In
                                                  lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses,
                                                  bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called
                                                  antibodies that protect the body from these invaders. Lupus is also a disease of flares (the symptoms worsen and
                                                  you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-
                                                  threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a
What is lupus?                                    full life.                                                                                                                LFA Web Site: Understanding Lupus
                                                  Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus
Is Lupus Contagiious?                             to someone.                                                                                                               LFA Web Site: Understanding Lupus
                                                  Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and
Is Lupus Like Cancer?                             spread into surrounding tissues. Lupus is an autoimmune disease, as described above.                                      LFA Web Site: Understanding Lupus
                                                  Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency
Is Lupus Like HIV/Aids?                           Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.                    LFA Web Site: Understanding Lupus
                                                  Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s
                                                  healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These
What does autoimmune mean?                        autoantibodies cause inflammation, pain, and damage in various parts of the body.                                         LFA Web Site: Understanding Lupus
                                                  Literally it means setting on fire. It is a protective process our body uses when tissues are injured. Inflammation
                                                  helps to eliminate a foreign body or organism (virus, bacteria) and prevent further injury. Signs of inflammation
                                                  include; swelling, redness, pain and warmth. If the signs of inflammation are long lasting, as they can be in lupus,
                                                  then damage to the tissues can occur and normal function is impaired. This is why the treatment of lupus is aimed at
What is inflammation?                             reducing the inflammation.
                                                  The immune system is designed to protect and defend the body from foreign intruders (bacteria, viruses). You can          LFA Web Site: Understanding Lupus
                                                  think of it like a security system for your body. It contains several different types of cells, some of which function
                                                  like "security guards" and are constantly on patrol looking for any foreign invaders. When they spot one, they take
                                                  action, and eliminate the intruder. In lupus, for some reason and we don't know why, the immune system loses its
                                                  ability to tell the difference between a foreign intruder and a person's own normal tissues and cells. So, in essence,
                                                  the "Security Guards" make a mistake, and they mistakenly identify the person's own normal cells as foreign
                                                  (antigens), and then take action to eliminate them. Part of their response is to bring antibodies to the site that then
                                                  attach to antigens (anything that the immune system recognizes as non-self or foreign) and form immune complexes.
                                                  These immune complexes help to set in motion a series of events that result in inflammation at the site. These
                                                  immune complexes may travel through the circulation (blood) and lodge in distant tissues and cause inflammation
What happens in autoimmune diseases like lupus?   there.                                                                                                                    LFA Web Site: Understanding Lupus
                                                  Lupus is the Latin word for wolf. The term has been associated with the disease since the 10th century, though the
                                                  reasons are unclear. Erythematosus means redness. It is speculated that the name was given to describe the skin
                                                  lesions (sores), which typically are red and perhaps at that time in history were thought to resemble the bite of a
                                                  wolf. Today we know that not everyone with lupus has rashes or skin lesions, and those who do would not say their
Where did the name come from?                     rashes look anything like a wolf bite.
                                                  Lupus can occur at any age, and in either sex. Nine out of ten people with lupus are women. During the childbearing
                                                  years (ages 15-44) lupus strikes women 10-15 times more frequently than men. People of all races can have lupus;
                                                  however, African American women have a three times higher incidence (number of new cases) and mortality than
                                                  Caucasian women. They tend to develop the disease at a younger age and to develop more serious complications.
Who Gets Lupus?                                   Lupus is also more common in women of Hispanic, Asian, and Native American descent.                                       LFA Web Site: Understanding Lupus

                                                  Sex
                                                  More than 90 percent of people with lupus are women.

                                                  Age
                                                  Symptoms and diagnosis occur most often when women are in their childbearing years, between the ages of 15 and
                                                  44. Symptoms of lupus will occur before age 18 in 15 percent of the people who are later diagnosed with the disease.

                                                  Race
                                                  In the United States, lupus is more common in people of color—African Americans, Hispanics/Latinos, Asian
                                                  Americans, Native Americans, Native Hawaiians and Pacific Islanders—than in the Caucasian population. It also
                                                  appears that lupus develops at an earlier age and is more severe among members of these ethnic groups.

                                                  Family history
                                                  Relatives of people with lupus have an approximately 5-13 percent chance of developing lupus. However, only about
What Are the Risks for Developing Lupus?          5 percent of children will develop lupus if their mother has lupus.                                                       LFA Web Site: Understanding Lupus
                                                       Systemic Lupus Erythematosus (SLE)                                                           • Cutaneous Lupus
                                                       Erythematosus refers to the skin, and this form of lupus is limited to the skin. The most common subtypes of
                                                       cutaneous lupus include:
                                                       o Discoid Lupus Erythematosus
                                                       o Subacute Cutaneous Lupus
                                                       o Acute Cutaneous Lupus (butterfly rash)
                                                       • Drug-induced Lupus Erythematosus, which is relatively rare, may be triggered by such drugs as hydralazine
                                                       and procaine amide
                                                       • Neonatal Lupus Erythematosus, which occurs in infants of women with specific blood test abnormalities
Are there different kids of lupus?                                                                                                                                          LFA Web Site: Understanding Lupus

                                                  Systemic lupus is the most common form of lupus, and is what most people mean when they refer to “lupus.”
                                                  Systemic lupus can be mild or severe. Some of the more serious complications involving major organ systems are:
                                                  • inflammation of the kidneys (lupus nephritis), which can affect the body’s ability to filter waste from the blood and
                                                  can be so damaging that dialysis or kidney transplant may be needed
                                                  • an increase in blood pressure in the lungs (pulmonary hypertension)
                                                  • inflammation in the heart muscle (myocarditis), which can lead to congestive heart failure
                                                  • inflammation of the nervous system and brain, which can cause memory problems, confusion, headaches, and
                                                  strokes
                                                  • inflammation in the brain’s blood vessels, which can cause high fevers, seizures, behavioral changes, and psychosis
                                                  • hardening of the arteries (coronary artery disease), which is a buildup of deposits on coronary artery walls that can
                                                  lead to a heart attack
Systemic lupus erythematosus                                                                                                                                                LFA Web Site: Understanding Lupus
                                                  Cutaneous refers to the skin, and this form of lupus is limited to the skin. Although there are many types of rashes
                                                  and lesions (sores) caused by cutaneous lupus, the most common rash is raised, scaly and red, but not itchy. It is
                                                  commonly known as a discoid rash, because the areas of rash are shaped like disks, or circles. Another common
                                                  example of cutaneous lupus is a rash over the cheeks and across the bridge of the nose, known as the butterfly rash.
                                                  Other rashes or sores may appear on the face, neck, or scalp (areas of the skin that are exposed to sunlight or
                                                  fluorescent light), or in the mouth, nose, or vagina. Hair loss and changes in the pigment, or color, of the skin are
                                                  also symptoms of cutaneous lupus.
                                                  Approximately 10 percent of people who have cutaneous lupus will develop systemic lupus. However, it is likely that
Cutaneous lupus erythematosus                     these people already had systemic lupus, with the skin rash as their main symptom.                                        LFA Web Site: Understanding Lupus   LFA Web Site: Lupus and the Skin   LFA Web Chat: Skin Disease in Lupus
                                                                                                                                                                          FAQ's General Lupus Information


                                                                  Drug-induced lupus is a lupus-like disease caused by certain prescription drugs. The symptoms of drug-induced
                                                                  lupus are similar to those of systemic lupus, but only rarely will any major organs be affected.
                                                                  The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or
                                                                  hypertension), procainamide (used to treat irregular heart rhythms), and isoniazid (used to treat tuberculosis). Drug-
                                                                  induced lupus is more common in men because they are given these drugs more often; however, not everyone who
                                                                  takes these drugs will develop drug-induced lupus. The lupus-like symptoms usually disappear within six months
Drug-induced lupus erythematosus                                  after these medications are stopped.                                                                                        LFA Web Site: Understanding Lupus
                                                                  Neonatal lupus is a rare condition that affects infants of women who have lupus and is caused by antibodies from
                                                                  the mother acting upon the infant in the womb. At birth, the infant may have a skin rash, liver problems, or low
                                                                  blood cell counts, but these symptoms disappear completely after several months with no lasting effects. Some
                                                                  infants with neonatal lupus can also have a serious heart defect. With proper testing, physicians can now identify
                                                                  most at-risk mothers, and the infant can be treated at or before birth. Most infants of mothers with lupus are entirely
Neonatal lupus                                                    healthy. not a universally fatal disease. In fact, today with close follow-up and treatment, 80-90% of the people with
                                                                  Lupus is                                                                                                                    LFA Web Site: Understanding Lupus
                                                                  lupus can expect to live a normal life span. Lupus does vary in intensity and degree, however, and there are people
                                                                  who have a mild case, there are those who have a moderate case and there are some who have a severe case of lupus,
                                                                  which tends to be more difficult to treat and bring under control. For people who have a severe flare-up, there is a
                                                                  greater chance that their lupus may be life-threatening. We know that some people do die of this disease and because
                                                                  of that we have a tremendous amount of respect for the potential of this disease. However, the majority of people
                                                                  living with lupus today can expect to live a normal lifespan. People frequently read in the literature that, 80-90% of
                                                                  people with lupus live for more than ten years. Unfortunately, this is often misinterpreted as- people with lupus live
                                                                  for only ten years.
                                                                  Let us clarify this.
Is lupus a fatal disease?                                         It is important to understand that the "10 years" does not represent the number of years the person will live, but          LFA Web Site: Understanding Lupus
                                                                  Overwhelming infection and kidney failure are the two most common causes of death in people with lupus. Recently
                                                                  there is new information which indicates heart disease may be another leading cause of death among people with
When people die of lupus, what do they usually die of?            lupus.                                                                                                                      LFA Web Site: Understanding Lupus
                                                                  People with lupus are no more likely to develop cancer than are people in the general population. However, people
Are people with lupus more likely to develop cancers?             who have received certain chemotherapy drugs do carry the added risk of developing cancer sometime later in life.           LFA Web Site: Understanding Lupus
                                                                  Many patients are concerned about the risk of cancer after having lupus for a long time, or after being treated for
                                                                  many years with immunosuppressive drugs such as Imuran. A study including almost 10,000 patients with lupus
                                                                  found that the risk to develop cancer is mostly related to non-Hodgkin's lymphoma, which affects the lymph system,
Is cancer (particularly sarcoma) more prevalent in lupus          lung cancer, and liver and bile duct cancers. Smoking increases the risk for cancer in lupus patients, just as it does in
patients? Could the Imuran have contributed?                      other people. So far, there is no good evidence for a link between Imuran and cancer in lupus patients.

                                                               Cancer can be treated in many ways; with surgery, radiation and/or chemotherapy. All people with lupus who have
                                                               surgery for cancer, should be followed closely by their personal physician and/or the rheumatologist to evaluate the
                                                               activity of their lupus throughout the course. For patients receiving steroid therapy and surgical procedures, their
                                                               steroid dosage will have to be adjusted during the time just shortly before surgery and then tapered slowly over time
                                                               after surgery. If a person is scheduled for surgery and they take non-steroidal anti-inflammatory drugs or aspirin,
Are there any special considerations regarding treatment of any of which may effect their clotting time, these medications will need to be stopped prior to surgery in order to
cancer in people with lupus?                                   minimize bleeding. Chemotherapy usually doesn't present any particular problems and can in turn treat active lupus.              LFA Web Site: Treating Lupus
Lupus and Multiple Sclerosis - I was diagnosed with MS 3       Multiple Sclerosis and lupus are both autoimmune diseases. They are diagnosed and treated in very different ways.
years ago and now my doctor thinks I may have lupus. Is        There is no direct connection between the two, however, lupus, known as a great imposter, can sometimes mimic or
there a connection between MS and lupus?                       imitate the symptoms of MS.
                                                               No gene or group of genes has been proven to cause lupus. Lupus does, however, appear in certain families, and
                                                               when one of two identical twins has lupus, there is an increased chance that the other twin will also develop the
                                                               disease. These findings, as well as others, strongly suggest that genes are involved in the development of lupus.
                                                               Although lupus can develop in people with no family history of lupus, there are likely to be other autoimmune
                                                               diseases in some family members. Certain ethnic groups (people of African, Asian, Hispanic/Latino, Native
                                                               American, Native Hawaiian, or Pacific Island descent) have a greater risk of developing lupus, which may be related
Is lupus hereditary?                                           to genes they have in common.                                                                                                  LFA Web Site: Understanding Lupus
                                                               Lupus does have a genetic predisposition. This means that if you have a first degree relative in your family who has
                                                               lupus, you are more likely to develop lupus than someone who does not have a family member with lupus. Even with
                                                               a family member with lupus, however, your chances of developing lupus are less than 5 percent. Lupus is a
                                                               multigenic disease, which means it requires a number of genetic factors for someone to develop lupus. This is in
I have been told that lupus can be hereditary. I have many     contrast to sickle cell anemia or cystic fibrosis which are one gene diseases. So, lupus is hereditary in the sense that
people in my family on my mother's side who have lupus. But it runs in families. The risk of developing lupus, even with a family member having the disease, is small. Routine
now I am being told that it can't be hereditary. Can you clear laboratory screening of family members is not currently recommended. If, however, there are symptoms of arthritis,
this up for me?                                                skin rash etc, then they should see their doctor.                                                                              LFA Web Site: Understanding Lupus
                                                               Lupus is a complex disease that likely is caused by several interacting features. For example, we know that inherited
                                                               genes, environmental exposures (such as certain medications, severe exposure to ultraviolet rays, perhaps certain
                                                               viral exposures at key times) and female hormones are all likely contribute to the development of systemic lupus.
                                                               Genetic predisposition is only one factor.

                                                                  Indeed, the majority of SLE cases that develop are sporadic (that is, no known relative has SLE). When looking at
                                                                  identical twins, in only 50 percent of cases do both siblings develop lupus. Normally we tell young women with
                                                                  lupus that the risk of their child developing the disease is only nominal, only 1 to 5 percent.

My wife’s mother has lupus. We would like to understand the       Currently, no screening or genetic tests are available. We encourage family members to lead active, healthy lives.
disease and find out if it can be hereditary. Are there any       Sunscreen protection is always a good idea. If symptoms develop (joint swelling and pain, unexplained rashes,
specific health tests we should consider? Is it possible to       atypical chest pain), we encourage family members to seek evaluation from their regular doctors, and to be sure to
prevent lupus -- in my wife or our children?                      mention the family history of SLE.                                                                                          LFA Web Site: Understanding Lupus
                                                                  Examples include

                                                                  • ultraviolet rays from the sun
                                                                  • ultraviolet rays from fluorescent light bulbs
                                                                  • sulfa drugs, which make a person more sensitive to the sun, such as:
                                                                  o Bactrim® and Septra® (trimethoprim-sulfamethoxazole)
                                                                  o sulfisoxazole (Gantrisin®)
                                                                  o tolbutamide (Orinase®)
                                                                  o sulfasalazine (Azulfidine®)
                                                                  o diuretics
                                                                  • sun-sensitizing tetracycline drugs such as minocycline (Minocin®)
                                                                  • penicillin or other antibiotic drugs such as:
                                                                  o amoxicillin (Amoxil®)
                                                                  o ampicillin (Ampicillin Sodium ADD-Vantage®)
                                                                  o cloxacillin (Cloxapen®)
                                                                  • an infection
                                                                  • a cold or a viral illness
                                                                  • exhaustion
                                                                  • an injury
What are some of the environmental triggers to set off the        • emotional stress, such as a divorce, illness, death in the family, or other life complications                                                                LFA Web Chat: Lupus and the
illness or to bring on a flar?                                    • anything that causes stress to the body, such as surgery, physical harm, pregnancy, or giving birth                       LFA Web Site: Understanding Lupus          Enviornment
                                                                                                                                                                          FAQ's General Lupus Information


                                                                 Hormones are the body’s messengers and they regulate many of the body’s functions. In particular, the sex hormone
                                                                 estrogen plays a role in lupus. Men and women both produce estrogen, but estrogen production is much greater in
                                                                 females. Many women have more lupus symptoms before menstrual periods and/or during pregnancy, when
                                                                 estrogen production is high. This may indicate that estrogen somehow regulates the severity of lupus. However, it
Can hormones trigger the development of lupus?                   does not mean that estrogen, or any other hormone for that matter, causes lupus.                                                   LFA Web Site: Understanding Lupus
                                                                 We do not know for sure. There are many anecdotal reports (personal accounts) of lupus flaring with pregnancy, the
                                                                 menstrual cycle, birth control pills, and hormone replacement therapy. We suspect that hormones play a role, but we
                                                                 don't know precisely what the role is. Lupus has a 9:1 female to male ratio so it is likely that hormones play a role,
                                                                 perhaps by influencing the immune system. Also, we know that female hormones have a definite effect on lupus
Are flares related to hormones?                                  mice used in research.                                                                                                             LFA Web Site: Understanding Lupus
Can I have my children tested?                                   Testing isn't advisable in individuals who do not have symptoms.                                                                   LFA Web Site: Understanding Lupus
                                                                 We do not know for certain. There are many anecdotal reports (personal accounts) of lupus flaring during or after a
Is lupus stress related?                                         stressful time, but this question requires further scientific study.                                                               LFA Web Site: Understanding Lupus
                                                                 There are no absolute contraindications to needed and appropriate medications for a person with systemic lupus.
                                                                 Your doctor should watch for allergic reactions to medications, and watch for any connection between flares and
                                                                 estrogen or oral contraceptives.
                                                                 People with lupus should be especially careful if they are prescribed sulfa antibiotics. These medications (Bactrim,
                                                                 Gantrisin, Septra) are often prescribed for urinary tract infections and may cause an increase in sun sensitivity and
                                                                 occasionally lower blood counts resulting in disease flares. There are also sulfa diuretics (water pills) such as
Are there any medications people with lupus should avoid?        Dyazide and diabetic drugs containing sulfa such as Aldactone.
                                                                 No. There are on-going studies of several suspected "clusters" of lupus case but no evidence has emerged that
Does lupus occur more often in certain geographical areas?       suggests lupus is more prevalent in specific areas.                                                                            LFA Web Chat: Lupus and the Enviornment
                                                                 We do not know. The cause of lupus, and many other autoimmune diseases, remains unknown. The respective roles
                                                                 of genetic and environmental factors in triggering lupus remain to be determined. The National Institutes of Health
                                                                 (NIH), the principal biomedical research agency of the United States Government established the National Institute
                                                                 of Environmental Health Sciences (NIEHS) to study issues related to environmental health. A meeting in September
                                                                 of 1998 at Research Triangle Institute(RTI) in Durham, NC organized by NIEHS, looked at autoimmunity and the
                                                                 environment and specifically lupus. A review of the discussion was published in the medical journal, Arthritis and
                                                                 Rheumatism (1998 Oct; 41(10): 1714-24) in an article titled: "Hormonal, Environmental, and Infectious Risk
                                                                 Factors for Developing Systemic Lupus Erythematosus" by Cooper GS, Dooley MA, Treadwell EL, St Clair EW,
Is lupus related to pollution or toxic chemicals?                Parks CG, Gilkeson GS.                                                                                                             LFA Web Site: Understanding Lupus
Can something in your diet cause lupus?                           There not been a so.
                                                                 We do has believe great deal of interest in this issue and to date there have been numerous well controlled research
                                                                 studies since 1992 that have looked at this question. However, none has shown a clear association between silicone
                                                                 breast implants and the development of lupus disease.
                                                                                                                                                              In March 1998, the
                                                                 National Institutes of Health requested that the Institute of Medicine (IOM) of the National Academy of Sciences
                                                                 (NAS) provide an independent, unbiased review of past and ongoing research on the health effects of silicone breast
                                                                 implants. To respond to this request, the IOM established a committee of 12 experts in relevant scientific and clinical
                                                                 areas to assess the scientific information on silicone breast implants and the relationship, if any, to various health
                                                                 conditions.

                                                                 A one-day scientific workshop was convened on July 22, 1998 in Washington, DC-testimony included epidemiology
                                                                 and observational studies, immunology reports, company data from Mentor Corp. and Dow Corning Corp., and
Silicone breast implants. I have silicone breast implants and    surgery, pathology, and radiology information. A public hearing followed on July 24, to gather information and
am being tested for lupus. Is there any connection between       views from a wide range of lay, advocacy, industry, and public policy groups.
silicone implants and lupus?
                                                                                                                                                                                                   Food and Drug Administration (FDA)
                                                                                                                                                                                                      Breast Implant Information Line
                                                                                                                                                                                                  1-800-532-4440 or visit their web site at:
                                                                                                                                                                                                     www.fda.gov/cdrh/breastimplants

                                                                 We don't know. There have been reports of women who had silicone breast implants removed and their symptoms                  The finial report made by the Institute of Medicine
If I have my implants removed, will my lupus symptoms            improved. On the other hand, there have been cases where symptoms have not improved after removal. To receive                               is available online at:
improve, will the lupus go away?                                 the most recent information on breast implants contact the                                                                        www.nap.edu/books/0309065321/html/
I have heard that dental fillings may trigger lupus. Is there    At the present time, we do not have any scientific data that indicates that dental fillings may act as a trigger of lupus.
anything to this?                                                In fact, it is highly unlikely that dental fillings aggravate or cause SLE.
Is there a cure for lupus?                                       It the present APS, a blood-clotting for lupus, but there certainly of those with SLE, can
                                                                 Atappears that time there is not a curedisorder that affects one-third is effective treatment. go into remission, but,
                                                                 unfortunately, there is no specific test to determine that it has actually truly remitted at any given time.
                                                                 Antiphospholipid antibodies and lupus anticoagulants are accepted blood tests in the diagnosis of APS, but other
                                                                 antibodies are known to be associated with the syndrome. For some of these other antibodies, testing is not yet
                                                                 available. Also, these antibodies can go away and then come back again in some people.

                                                                 Once a person is clearly diagnosed with APS, the current recommendation is to assume that preventive treatment is
                                                                 required indefinitely. This poses a serious problem for patients and their doctors, since long-term blood thinners
                                                                 have significant side effects, and there is no way to know, in individual cases, if this ongoing treatment is really
                                                                 necessary. Still, as it stands today, the risks of not using anticoagulation therapy outweigh the risks of using it.

                                                            Numerous laboratories around the world are working on this problem, and we hope that tests to assess a person’s
Can the antiphospholipid syndrome (APS) seen in SLE go into actual ongoing risk for blood clotting will be improved in the near future. We can also be cautiously optimistic that
remission?                                                  in time safer therapies will be developed,lupus are immune therapies,infections than completelyno longer require long-
                                                            There is some evidence that people with possibly more likely to get so that APS patients will healthy people, even
                                                            when they are not taking corticosteroids (prednisone and similar medications). The most common infections are in
                                                            the respiratory tract (colds, sore throats, sinusitis, bronchitis, and pneumonia), the urinary tract (bladder or kidney
                                                            infections), and the skin (boils, cellulitis, and infected cuts).

                                                                 If a person with lupus is taking corticosteroids every day, particularly more than 10 mg a day, the risk of infection
                                                                 goes up considerably. However, if a person can take corticosteroid doses once in the morning every other
                                                                 day—instead of every day—there is not much, if any, increase in the risk for infections. Of course, every-other-day
                                                                 treatment does not control active lupus as well as every day.

                                                                 Other medications used for moderate to severe forms of lupus, such as azathioprine (Imuran), mycophenolate mofetil
                                                                 (CellCept), and cyclophosphamide (Cytoxan), increase infections even more than having the disease does. Herpes
                                                                 zoster outbreaks (shingles)—with painful blisters along the course of a nerve—are particularly increased by the
                                                                 immunosuppressive medications. In general, the more severe the lupus is, the higher the risk for infection, partly
                                                                 because of being sick and partly because of the treatments. In contrast, the anti-malarials (hydroxychloroquine,
                                                                 Plaquenil, is the most commonly prescribed) do not increase infections.
Are people with lupus more prone to infections even if they
are not taking immunosuppressive drugs?                          There are excellent strategies to reduce your risk for infection. You should have your vaccinations up to date,                LFA Web Site: Living with Lupus (Infections)
                                                                                                                                                                            FAQ's General Lupus Information

                                                                    To begin with, a person with lupus should always discuss the issue of donating blood with their doctor. You should
                                                                    not donate blood if you are too anemic (a low red blood cell count). Each blood donation service will have their own
                                                                    set of guidelines for eligibility, so be sure to know the guidelines of the donation service you intend to use. According
                                                                    to the American Red Cross, while a diagnosis of lupus was at one time a disqualifier for the donation of blood, this is
                                                                    not longer the case. The Red Cross will allow those with lupus to donate even while taking such medications as
                                                                    Plaquenil and/or Corticosteroids. In contrast to the Red Cross, the National Institutes of Health (NIH) will not accept
                                                                    blood donations from those with lupus. Their thought is that without a full understanding of the causes of disease
                                                                    like lupus and the role of antibodies, they can not ensure that there is absolutely no risk of transmission of harmful
                                                                    elements to the other patients.

                                                                    In fact, since blood components are separated, the only components in a patient's blood that might be problematic
                                                                    are plasma and/or antibodies. Red blood cells or platelets should be safe to donate as long as the donor has sufficient
                                                                    amounts for themselves, and these are the parts of the blood most often needed by patients who receive blood.

Can a person with lupus donate blood?                               So do your homework on the guidelines of the donation service you have chosen and discuss with your doctor
I was diagnosed with Multiple Sclerosis (MS) 3 years ago, and       Multiple Sclerosis and lupus are both autoimmune diseases. They are diagnosed and treated in very different ways.
now my doctor thinks I may have lupus. Is there a connection        There is no direct connection between the two; however, lupus, known as a great imposter, can sometimes mimic or
between MS and lupus?                                               imitate the symptoms of MS. are sensitive to ultraviolet light. This sensitivity is typically from ultraviolet B (UV-B)
                                                                    The majority of lupus patients
                                                                    but can also be from ultra-violet A (UV-A) in some individuals. The sun and fluorescent lights are constantly
                                                                    exposing us to ultraviolet light. Therefore, it is strongly recommended to lupus patients to avoid ultraviolet light
                                                                    exposure through sun protective clothing, sunscreen, sun block and avoidance. Therefore, when asked by a lupus
                                                                    patient who is considering light therapy for seasonal affective disorder (SAD), we have to ask if the benefit
                                                                    outweighs the risk. There is a potential risk of a lupus flare for the patient using light therapy. However, is the
                                                                    patient demonstrates no photosensitivity and the SAD is so severe that various therapies are not working, it could be
                                                                    considered. I would strongly suggest that a lupus patient considering light therapy for SAD talk with their
                                                                    rheumatologist to weigh the potential risk and benefit.

                                                                    Photosensitivity -- Photosensitivity refers to the development of a rash after exposure to UV-B radiation found in
I have SLE and have been considering light therapy for              sunlight or fluorescent light. It occurs in 60 to 100 percent of patients with SLE. Some patients are also sensitive to
Seasonal Affective Disorder (SAD). I was wondering if the           UV-A (as from a photocopier), and may even be sensitive to the visible light spectrum. Glass protects individuals
lights used for such therapy can trigger flare-ups? (due to UV      sensitive to UV-B, but only partially protects those sensitive to UV-A. Blonde, blue eyed, fair skinned individuals are
exposure or any other concerns)                                     much more photosensitive than brunettes or individuals with pigmented skin; the incidence is also greater in those          LFA Web Chat: UV Light and Lupus

I have lupus (obviously) and Factor V. Leiden. I know that      There is absolutely no relationship between lupus and Factor V Leiden. Factor V Leiden is an inherited disorder that
they are not related, but wonder if one would have an effect    can cause risk for blood clots. Some lupus patients have other reasons to have increased risk for blood clots. Some
on the other.                                                   lupus patients also have Factor V Leiden, but that is just circumstance that put both of those risks in one person.
                                                                The issue of lupus photosensitivity is a complex one and one of the least scientifically studied clinical aspects of
                                                                cutaneous and systemic lupus. It is my opinion that if a standard fluorescent tube lighting source is shielded by a
                                                                standard acrylic plastic diffuser, there’s virtually not significant risk for people with systemic lupus. These plastic
                                                                diffusers are available form a variety of companies. However, if a person with lupus I exposed to unshielded
I'm concerned about new reports encouraging people to           fluorescent lighting at close distances for prolonged periods of time, then the cumulative exposure to UVB and UVA
change all incandescent light bulbs to fluorescent bulbs. Don't could be a problem. You may contact Lupus Now Editor Jenny Allan at allan@lupus.org for a copy of my 1993
fluorescent lights produce ultraviolet rays that are harmful    publication (a letter to the Editor to the journal Arthritis and Rheumatism) that addresses the issue of ultraviolet light                                          LFA Web Site: Living with Lupus
for people with lupus?                                          leakage from fluorescent lighting tubes as a risk for lupus photosensitivity.                                                           Allan@lupus.org                  (Sensitivity to Light)       LFA Web Chat: UV Light and Lupus
In 1997, I was diagnosed with lupus. In the beginning my        Lupus is one of the several illnesses that have been considered connective tissue diseases. This is an old-fashioned
doctor sometimes said "lupus" and sometimes "connective         term, but it is still used in confusing cases when the diagnosis is uncertain. This frequently happens to people early
tissue disease." Why?                                           in the course of lupus.
                                                                Diabetes and lupus are both chronic diseases that can increase the risk for kidney damage, high blood pressure, and
                                                                heart disease. Keeping lupus under control and blood glucose (sugar) under control are paramount. Modifying al
How does diabetes affect my lupus and vice versa? What can other risk factors for heart disease and avoiding medications that are toxic to the kidneys or rise blod pressure might
I do when either get out of balance?                            be of some help.
                                                                It is generally thought that chronic fatigue syndrome (CFS) and lupus fatigue are two distinct entities. In 1994, an
                                                                international panel of CFS research experts convened to draft a definition of CFS that would be useful both to
                                                                researchers studying the illness and to clinicians diagnosing it. Chronic fatigue syndrome is defined as (1) having
                                                                severe chronic fatigue of six months or longer with other known medical conditions excluded by clinical diagnosis;
                                                                and (2) concurrently having four or more of the following symptoms: substantial impairment in short-term memory
                                                                or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness;
                                                                headaches of a new type, pattern or severity; unrefreshing sleep; and pain in muscle after exercising that last more
Is there a connection between chronic fatigue syndrome and than 24 hours. Lupus fatigue does not have a formal definition. Note that CFS appears in the absence of other
lupus fatigue?                                                  medical conditions. Therefore, fatigue can be seen in lupus, but by definition is not related to CFS.
                                                                Autoimmune thyroid problems are relatively common in lupus, but lupus is probably not causing the thyroid
                                                                disorders. Some genes contributing to lupus also predispose a person to thyroid problems. Also, a protein called
                                                                "interferon alpha" is increased in the blood of lupus patients, and contributes to both lupus and autoimmune thyroid
                                                                disease. It may be that specific genes, together with interferon alpha, contribute to the development of both lupus
Can lupus cause thyroid problems? If so, what affect does       and thyroid diseases independently, rather than lupus causing the thyroid problem. Removing the thyroid will cause
removal of the thyroid have on the body?                        the usual problems associated with low thyroid hormone, has not reported to affect lupus.
                                                                Lupus itself and the immunosuppressive medicines used to treat lupus increase the chance of infections, including
Can you tell me the risk a woman with lupus has with having viral infections such as herpes. Evidence suggests that lupus patients have a particular problem with herpetic viral
sex with a man with herpes simplex ... genital and/or oral?     infections. Several things including sunlight exposure and stress can also set off a herpetic viral reactivation.
                                                                According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, changes in vision can be a
                                                                result of lupus or because of the corticosteroids and antimalarials used to treat lupus. Problems can include
                                                                inflammation of the eye, glaucoma, cataracts, general changes in vision, and blocked tear ducts. On very rare
                                                                occasions, blindness can result. Warning signs include:
                                                                • Development of a rash over the eyelids
                                                                • Mucus discharge from the eye
                                                                • Blurred vision
                                                                • Sensitivity to light
                                                                • Headaches
                                                                • A sore, red eye
                                                                • Lack of tears, and eyes that hurt and are dry
Can lupus affect your vision?                                   • Episodes of flashing lights and partial blindness
                                                                There are no specific problems that have been associated with tattoos in lupus patients. Keep in mind the small risk
                                                                of infection with hepatitis B and C. Occasionally lupus patients have been known to have a reaction to the tattoo dye
                                                                but this is very rare. Remember, if you are on immunosuppressive medication, this may increase the chances of
Can a woman with SLE & taking Medro every day get a             infection and slow healing of the tattoo area. As with other procedures, it is best done when you are in remission or a
tattoo?                                                         welled controlled mild disease state. Consult with your physician prior to getting your tattoo.
                                                                You are correct that you need to protect yourself from excessive exposure to the sun. First, you need to get a wide
                                                                brimmed hat (I know it is not the best look, but neither is the skin rash). If possible, try to have an umbrella to shade
                                                                you. You need to use sunscreen on any and all exposed areas and reapply as needed. There is also a company called
I'm going to a three day concert this summer in TN. How can Coolibar. They offer a unique range of sun protective clothing, sun hats, sun protective swimwear and multi-
I protect myself from the sun when shade really isn't an        spectrum sunscreens. You may want to check out their website. Check with your physician before the concert to
option?                                                         make sure that everything is going well with you ... and for any last minute advice.                                             LFA Web Site: Living with Lupus   LFA Web Chat: UV Light and Lupus
                                                                                                                                                                            FAQ's General Lupus Information


I live in a high humidity state and the summers are hard on
me. Last summer I spent a week at Bethany Beach in
Delaware. I felt great. I used sun screen, beach umbrella, and
a long sleeve linen shirt. I never felt so good. Could this be
because the humidity is low there? We were there in the        Most doctors prefer those with lupus to not spend much time in the sun. However, it appears that you tolerate it
middle of July!                                                well. This issueis such a heterogeneous disease,ifityoudifficult to predict orgood for you.
                                                               Because lupus of humidity is not studied and         is do well, it must be generalize about what would happen if it
                                                               were left untreated. For the individual patient, a critical question would be what disease manifestations they have.
                                                               This is because the management and treatment of lupus should be guided by the degree and severity of clinical
                                                               manifestations. Thus, up to 50% of lupus patients may have non-life threatening features, such as fatigue, joint pain,
                                                               and rash. Non-steroidal anti-inflammatories (e.g. ibuprofen) and anti-malarials (plaquenil) are frequently used for
                                                               symptomatic relief in this case. Because there is a risk of disease flare with more severe organ involvement (kidney
                                                               or lung/heart inflammation, for example), lupus patients should have regular evaluations to make sure life-
                                                               threatening involvement is not developing. Many lupus doctors prescribe antimalarials even in the setting of mild
                                                               disease because there is good evidence they may decrease the frequency and severity of flares and have low toxicity.

                                                                     For patients with severe organ involvement (like kidney inflammation) treatment is very important. Before
What happens if one decides not to treat lupus?                      medications (like steroids and other immunosuppressives) were available to treat lupus, overall 5 year survival rates
                                                                     Dental decay can have a number of causes, such as frequent intake of sweets or carbohydrates, poor cleaning
                                                                     techniques, dry mouth, and/or the bad luck to be one of those individuals who seem to grow lots of bacteria that
                                                                     cause decay.

                                                                     I am not aware of a direct connection between tooth decay and lupus. However, dry mouth -- perhaps caused by the
                                                                     medications you may be taking for lupus or by the condition called Sjögren’s syndrome -- can create a terrible
                                                                     problem with decay. However, with a compliant patient, decay can almost always be conquered. It may take daily
                                                                     fluoride applications, dietary changes, prescription mouthwash and use of gums or mints containing significant
                                                                     amounts of xylitol, and of course meticulous daily use of a toothbrush and dental floss.
I just returned from a dental exam. I had six cavities, which is
unusual for me. Could my dental situation and my lupus be        Further Note: Xylitol, which occurs naturally in many fruits and vegetables, is gaining increasing acceptance as an
connected?                                                       alternative sweetener because of its role in reducing the development of dental caries (cavities).
                                                                 The simple answer is no. The more complex answer is that, for the majority of patients, the disease is characterized
                                                                 by periods of flares (i.e., active disease) and periods where things are relatively quiescent (i.e., inactive disease). In
                                                                 the latter situation, quiescence is usually achieved with medication.

                                                                     Remission may be harder to define. One definition is that there are no symptoms, the patient is taking no
                                                                     medications, and all tests -- including the antinuclear antibodies -- become normal. In my study published 20 years
                                                                     ago, fewer than 6 percent of patients achieved that goal.
                                                                     Therefore I prefer to say that lupus may often become quiescent, but some medication may be required to keep it
Does lupus always eventually go into remission?                      that way.
FAQ's General Lupus Information
FAQ's General Lupus Information
FAQ's General Lupus Information
FAQ's General Lupus Information
FAQ's General Lupus Information
                             Questions



My MRI from 3 years ago showed plaques. Is there anything on the
MRI of people with lupus of the nervous system that is diagnostic for
CNS lupus?




Can lupus cause memory problems?
                                         Answers
Diagnosis of CNS lupus is difficult as there is not one specific diagnostic test to detect
nervous system involvement in lupus. The abnormalities seen on the MRI scans are not
specific for systemic lupus. In other words, they could be due to a number of things. The
findings on these specialized tests and sometimes other tests such as a brain wave test
(electroencephalogram, EEG) and a spinal tap have to be considered along with clinical and
laboratory findings in establishing a diagnosis of CNS lupus.
The term “lupus fog” is almost universally known to people with lupus. The phrase reflects
the difficulty that you may have in completing once-familiar tasks, such as remembering
names and dates, keeping appointments, balancing your checkbook, or processing your
thoughts. Properly termed “cognitive dysfunction” or “cognitive impairment,” this inability
to recall information can be extremely frustrating. These symptoms may come and go, but
may also be continuous, making school or work difficult or even impossible in extreme
cases. People with both lupus and fibromyalgia are even more likely to experience cognitive
problems.

If you are experiencing these signs of confusion and memory loss, you may benefit from the
skills of a cognitive therapist, either a psychologist or speech-language pathologist. These
professionals can help you develop coping techniques and strategies to improve
concentration and overcome these difficulties. These techniques may include puzzles, games,
biofeedback, using a daily appointment calendar, balancing activities to avoid stress, etc.
Cognitive therapists can also explain how to use memory aids and decrease distractions.

These tips may help ease the frustrations of cognitive impairment caused by lupus.

• Pay attention when receiving new information. Repeat it or write it down. Verify any
details.
• Focus on one task at a time.
• Take good care of your body; exercise, eat well, and get enough sleep.
• Learn memory techniques, such as associating a person’s name with an image, or repeating
the name several times in conversation.
            Links                             Links




  LFA Web Site: Lupus and the   LFA Web Chat: Lupus and the Central
       Nervous System                    Nervous System




LFA Web Site: Living With Lupus LFA Web Site: Lupus and the Nervous
  (Memory Loss and Lupus Fog)                 System
              Links




LFA Web Chat: Lupus and the Central
         Nervous System
                      Questions


My child has lupus. What is the prognosis?




What is the best preventive treatment approach to
protect the bones of children with lupus who have to
take corticosteroids?
                                        Answers
The prognosis for children and adolescents with systemic lupus has improved
dramatically over the past twenty years. With modern therapy, children do nearly as well
as adults. in children with lupus is very important. While physicians treating children
Bone health
with lupus have a high level of awareness about how the toxicities of the medication used
to treat the disease affect the skeleton and how the disease itself affects bone health, we
have not done enough studies to know how best to treat this problem. At this time, I am
comfortable recommending adequate calcium and vitamin D supplementation. In
addition, an effort should be made, despite the disease, to have children do some kind of
exercise four to five times a week for 30 minutes. Even with lupus, the combination of
calcium, vitamin D, and exercise will work to lay down new and healthy bone. In
addition, for children on high doses of glucocorticoids and/or immunosuppressive
medications, cautious use of mild anti-resorptive agents like calcitonin could bee
considered. On the bright side, when lupus activity lessens, children often have catch-up
bone growth.

For adults with lupus on glucocorticoids, there are a number of bone-active medications
that we can use to prevent and treat bone loss. However, studies that carefully evaluate
the benefits and risks associated with a growing skeleton in children with lupus have not
           Links                           Links


LFA Web Chat: Teens and Lupus   LFA Web Chat: Pediatric Lupus




LFA Web Chat: Teens and Lupus   LFA Web Chat: Pediatric Lupus
Links
                              Questions


What are the symptoms of cutaneous lupus?


Are there different types of cutaneous lupus?




What kind of doctor treats cutaneous lupus?




Chronic cutaneous (discoid) lupus




Are there any precautions I should take with my chronic cutaneous
lupus?




Are there other forms of chronic cutaneous lupus?




Subacute cutaneous lupus
Acute cutaneous Lupus


How is cutaneous lupus treated?

How is cutaneous lupus different from systemic lupus?


Can cutaneous lupus turn into systemic lupus?




I have hair loss due to several scars on my scalp. All are about the size of
silver dollars. Is there anything to help this kind of hair loss?




Will the drugs used to treat baldness help the hair loss due to lupus?




Is there anything that can be done to cover the lesions (sores) that show-
up on my face?
Can lupus cause either hives or a sensation of burning in the skin?




What is photosensitivity and what are photosensitivity reactions?




I have cutaneous lupus. Lately, I've heard people discussing UVA1
phototherapy as a potential option. I'm interested in this treatment
option. But because I'm photosensitive, I'm skeptical as to how this
would really help me.




Is there any medication that helps to clean the scar on lupus butterfly
[rash]?
I was wondering if you could provide information on Chilblain's lupus. I
would like to know general information, symptoms/diagnosis, and
treatment information. Is it likely that Chilblain's lupus may develop
into SLE? How can you really distinguish between Chilblain's and SLE
if you experience symptoms of both and have a positive ANA?




Is massage therapy a contraindication for those with cutaneous lupus?




Can patients with SLE have laser hair removal safely? If so, which kinds
of lasers are better for our skin?




I'm wondering if you are aware of any contraindications with respect to
intense pulsed light therapy (or photo facials) and systemic lupus.

I am an African American woman who is having significant hair loss. I
have scarring and itching. I was wondering ... would I be able to relax
my hair? Or what hair treatment can I use to braid my hair or weave my
hair? I am bothered by the hair loss.
Please explain a rare disease called panniculitis.




Does lupus cause hair loss?

Is there any connection between lupus and occurrence of erethyma
nodosum?

I have a DLE and now diagnosed with Tinea Versicolor. Is this normal
with DLE or SLE?

I have discoid lupus on my face cheek, and would like to know if laser
treatment for removal would help for it to disappear and then I could
continue on with medication so that my face remains clear? Like starting
meds as if I was using the meds to prevent any more flare ups.




Is the skin disease Lichen Planus related in any way to lupus?
Is treatment with lasers, collagen, restalyne, Botox or Thermage okay for
people with either cutaneous or systemic lupus? What about
microdermabrasion chemical peels and sclerotherapy for spider veins?
I'm going to a three day concert this summer in TN. How can I protect
myself from the sun when shade really isn't an option?
                                         Answers
The symptoms of cutaneous lupus may include a variety of different looking skin rashes,
photosensitivity (where exposure to ultra-violet light triggers a rash), and sometimes ulcers
on the inside of the nose or mouth.
Lupus skin disease, called cutaneous lupus erythematosus, can occur in one of three forms:
chronic cutaneous (discoid) lupus erythematosus, subacute cutaneous lupus erythematosus,
and acute cutaneous lupus erythematosus.
Lupus skin rashes and lesions should be treated by a dermatologist, a physician who
specializes in caring for the skin. To determine whether a lesion or rash is due to cutaneous
lupus, your physician will usually want to look at the tissue under a microscope. Taking
the tissue sample is called a biopsy.
Chronic cutaneous lupus (discoid lupus) appears as disk-shaped, round lesions. The sores
usually appear on your scalp and face, but sometimes they will occur on other parts of your
body as well. Approximately 10 percent of people with discoid lupus later develop
systemic lupus, but these people probably had systemic lupus to begin with, with the skin
rash as the first symptom.
Discoid lupus lesions are often red, scaly, and thick. Usually they do not hurt or itch. Over
time these lesions can produce scarring and skin discoloration (darkly colored and/or
lightly colored areas). Discoid lesions that occur on your scalp may cause your hair to fall
out. If the lesions form scars when they heal, your hair loss may be permanent. Cancer can
develop in discoid lesions that you have had for a long time, so tell your doctor about any
changes in the appearance of one of these lesions.
Discoid lupus lesions can be very photosensitive, so preventive measures are important:

• avoid being out in the sunlight between the hours of 10 a.m. and 4 p.m.
• use plenty of sunscreen when you are outdoors
• wear sun-protective clothing and broad-brimmed hats
• limit the amount of time you spend indoors under fluorescent lights

Chronic cutaneous lupus may also appear in different forms including:
1. verrucous (wart-like) discoid LE
2. lupus tumidus - elevated areas of red skin with no scale or scarring
3. lupus profundus - discoid skin lesions in conjunction with panniculitis
4. palmar-plantar erosive discoid LE - discoid lesions on the hands and feet

Subacute cutaneous lesions may appear as areas of red scaly skin with distinct edges, or as
red, ring-shaped lesions. The lesions occur most commonly on the sun-exposed areas of
your arms, shoulders, neck, and body. The lesions usually do not itch or scar, but they can
become discolored. Subacute cutaneous lesions are also photosensitive so preventive
measures should be taken when spending time outdoors or under fluorescent lights.
Acute cutaneous lupus lesions occur when your systemic lupus is active. The most typical
form of acute cutaneous lupus is a malar rash—flattened areas of red skin on your face that
resemble a sunburn. When the rash appears on both cheeks and across the bridge of the
nose in the shape of a butterfly, it is known as the “butterfly rash.” However, the rash can
also appear on your arms, legs, and body. These lesions tend to be very photosensitive.
They typically do not produce scarring, although changes in skin color may occur.
The medication used to treat lupus-related skin conditions depends on what kind of
cutaneous lupus you have. The most common treatments are ointments, such as steroid
cream or gel. In some cases liquid steroids will be injected directly into the lesions.
Cutaneous lupus is confined to the skin, whereas systemic lupus may involve not only the
skin but any of the other organ systems in the body.
Approximately 10 percent of people with discoid lupus later develop systemic lupus, but
these people probably had systemic lupus to begin with, with the skin rash as the first
symptom.
If biopsy results indicate advanced scarring on the scalp, then there is little chance of
bringing back significant amounts of hair. If, on the other hand, scarring is prevalent, then
treatment with corticosteroid and/or antimalarial drugs may be successful in getting the
hair to return. When the disease is inactive, and scarring is not present hair usually grows
back.
Suppressing the disease with medication helps hair to re-grow. Antimalarials and
corticosteroids promote hair growth. Minoxidil (Rogaine) solution is a blood pressure
preparation that promotes hair growth in balding men. It promotes hair growth in male and
female lupus patients but does not decrease hair loss."
Always check with your doctor before using any over the counter product.
Yes. There are make-up products available commercially which may be helpful in this
situation.

Fallene's Total Block® SPF 60 Foundation can be used as a make-up as well as a sun
block.
Total Block
Fallene, Ltd.
677 West De Kalb Pike
King of Prussia, PA 19406
1-800-332-5536
http://www.totalblock.com/

Covermark Cosmetics
157 Veterans Drive, Suite D
Northvale, NJ 07647
1-800-524-1120
www.covermarkusa.com/
Lupus may cause hives. Itching can also occur but this is not a common finding. The
sensation of itching is due to irritation of nerve fibers in the skin. If the irritation is more
intense, it may cause a burning sensation.
Photosensitivity is sensitivity to the UV (ultra-violet) rays from the sunlight and other UV
light sources. Photosensitivity reactions typically include a rash, but may also trigger
fever, fatigue, joint pain and other symptoms of SLE. In some cases, sun exposure has
resultedthe the onset of kidney diseasethe newly-formed North American Rheumatologic
Here is in consensus statement from
Dermatology Society (NARDS) on the issue of UVA1 therapy for lupus.

"There is some published evidence based on a relatively small number of patients studied
that supports the use of UVA1 phototherapy for some of the skin lesions of lupus.
However, there is also published evidence that raises the concern that UVA1 irradiation
might induce or aggravate abnormal skin changes in lupus patients. The specific dose and
wavelength spectrum of UVA1 radiation delivered to the skin of a patient during
phototherapy might be critically important as to whether UVA1 phototherapy might help
or worsen lupus skin disease. Therefore, we believe that UVA1 phototherapy is at this time
considered by most clinicians and investigators to be experimental and in need of further
scientifically valid study. We fully support further systematic research on the clinical value
of this type of photobiologic treatment in lupus. In addition to its effects on lupus skin
disease, more valid research is needed on the effects of UVA1 phototherapy on the
systemic manifestations of lupus. A primary mission of the North American
Rheumatologic Dermatology Society is to foster and facilitate such research."
According to Dr. Andrew Franks, Professor of Clinical Dermatology at the New York
University School of Medicine: "It depends on what is meant by 'clean the scar.' If the area
is flat but is darkened, most lightening creams will not work because the pigment stain is
not in the epidermis or top layer, but is in the dermis. Recently, laser technology has been
shown to be more effective, particularly with IPL or intense pulse light. This technology
also works on residual dilated red blood vessels similar to its use in rosacea.

If topographical scars are present there are a few ways to correct. If depressed, the scars
can be filled in with hyaluronic acid such as Restylane. If elevated, the CO2 LASER is
effective but only with a physician experienced with its use in lupus patients, as with all
the above procedures. For example, here at NYU at our Cutaneous Lupus Center, we have
performed all these procedures on selected patients who meet our criteria for best risk-
benefit ratio."
Chilblains (or pernio) are itchy and/or tender red or purple bumps that usually come on
from cold exposure but can sometimes be precipitated by sun exposure or smoking. They
are considered to be a form of skin vasculitis (blood vessel inflammation). They can occur
in people with lupus or in otherwise healthy people, especially children and the elderly.
Hormonal changes and/or poor nutrition, poor circulation and bone marrow disorders are
also associated with pernio. Some reports have associated this condition with
antiphospholipid antibodies also.

They usually come on a few hours after cold exposure, often on fingers, toes, heels, nose or
ears, get better by themselves over one to two weeks by just avoiding exposure to
precipitating causes. Some people use topical steroids for this condition when it is more
severe. Occasionally the more severe lesions could get infected so antibiotics would be in
order.

They do not necessarily lead to any further disease in and of themselves. The best way to
limit or help this condition is to keep extremities warm, don't smoke, eat an adequate,
healthy diet, and above all do not smoke (also it is important to avoid second hand smoke).
You probably would not be able to prevent this 100% but with reasonable care, this
In general, massage therapy will have no negative impact on cutaneous lupus. However,
there are a few specific instances where caution is advised. Thus, intense or deep, vigorous
massage may induce subcutaneous bleeding or visible bruising. This may invoke
koebnerization, the process whereby cutaneous lupus may be produced at the sites.
Another issue is the use of various oils during massage. If they induce an allergic reaction,
cutaneous lupus may also activate at the sites, also due to koebnerization. While these
issues may be uncommon, and the benefit of massage for musculoskeletal disease is
positive, it is worthwhile for cutaneous lupus patients to be aware and prudent.
There is some concern about the use of lasers in patients with lupus because of the slight
risk of skin redness, swelling, and pigmentary changes. These types of changes could
potentially cause skin lupus to flare, although there is no data about the risk of this. There
is no data about the safety of lasers in SLE. In a recent review of studies, long-term hair
removal was not obtained with any treatment, so the question is whether the risk is
worthwhile if there is a chance of flaring lupus. More systematic studies are needed in this
area to give a definitive answer.

There is some concern about longer wavelengths of light, as found in intense pulsed light
therapy, potentially exacerbating lupus. UVA1 has actually been used as therapy for some
patients, but in one phototesting study in Britain, longer wavelengths of light (beyond UV),
as might be found in intense pulsed light (IPL) therapy could cause induction of lesions. I
think there is probably a variability of response between patients and that this area needs
more study before one can say much about safety or even potential therapeutic use.
The less manipulation, the better. Any treatments that could irritate the scalp may lead to
further itching and scarring. A braid or hair weave should be fine, although minimizing
pulling on the hair is best. Thus a tight braid should be avoided. Another option is a wig
and there are some elegant options available. Sometimes insurance will cover this if the
hair loss if for a medical condition.
Lupus panniculitis or lupus profundus is a rare inflammation of the fat beneath the skin,
leading to a lumpy, sometimes painful dimpling of the skin and the tissue beneath it. It is
an extension of skin lupus. It is rare and sometimes slow to respond to treatment (normally
treatment is with plaquenil and occasionally with steroids). The cause is not known. It is
According associated Wallace, M.D. in The Lupus Book, "there are many reasons why
usually not to Daniel J with more severe internal lupus.
lupus may lead to hair loss. First of all, active disease is associated with the plugging of
hair follicles, which results in clumps of hair simply falling out after being combed or
washed (called "lupus hair"). Patients with discoid lupus can experience mild, generalized
hair loss, bald spots (alopecia areata), or even total baldness -— in the temples and on top
of the head. Also, infections, chemotherapy, emotional stress, and hormonal imbalances
are associated with hair loss. All told, about 30 percent of patients with SLE and DLE
report significant hair loss."

"The treatment of alopecia depends on its cause. For example, discoid lesions respond to
local scalp injections with steroid preparations. If these areas form thick scars, hair may
not regrow. Tapering off steroid use eliminates the "balding" pattern. Antimalarials and
corticosteroids promote hair growth. Minoxidil (Rogaine) solution is a blood pressure
preparation that promotes hair growth in balding men. It promotes hair growth in male and
female lupus patients but does not decrease hair loss."

Dr Victoria Werth during her LFA webchat on December 20, 2006 stated that "Usually
when the lupus comes under control, the hair will regrow if the problem is diffuse thinning
There is an increased incidence of erythema nodosum in lupus. There are other diseases
where the association is stronger (inflammatory bowel disease, Behcets, sarcoid). The
mechanism for the disease is unknown.
Tinea versicolor is a common fungal infection of the skin. It can occur in anyone,
especially in warm climates, but someone with immune suppression may be more likely to
get it.


There are some reports of the pulse dye laser helping in lupus. This approach to treatment
has not been studied in an organized way, and it is possible that some patients might
actually flare.
Lichen planus is usually a separate skin disease from lupus erythematosus. However, there
are patients who have an overlap between cutaneous lupus and lichen planus, meaning that
they have both types of skin lesions. Since skin lupus and lichen planus frequently look
very different clinically and under the microscope, it is possible to tell the difference
between them, even in the same person. Both diseases are caused by inflammatory cells
that home to the skin, often forming a "band-like" infiltrate between the first and second
layer of skin. There are some differences in the type of cells in the skin between the two
conditions.
With the recent attention on plastic surgery and other cosmetic procedures, more people --
including those with lupus -- are questioning the safety of various skin treatments. Some
may be considering dermatologic interventions for disease-related reasons, including side
effects from lupus treatment (such as stretch marks) or from lupus itself (such as scars
from discoid lupus).

However, a distinction should be made between reconstructive or reparative treatments for
damaged skin and purely cosmetic procedures. Lupus patients in remission who are left
with permanent scarring may be treated the same way as a person who has been in a car
accident or in a fire. Certainly we are cautious with these treatments because any technique
that manipulates the skin could reactivate the lupus. There are a number of criteria we
establish before considering a person with lupus for these types of skin treatments.

First, the person's lupus must be in full remission -- and his or her rheumatologist and
dermatologist must agree with the planned treatment.
Laser Treatments: In the last three to four years, pulsed-dye and other laser treatments
have been particularly helpful in reducing the blood vessels caused by the lupus malar, or
"butterfly," rash. This is the same technology that has been used on children with port-wine
birthmarks on the face.
CO2 laser resurfacing of scars has also shown promise in selected patients. Again, all
patients considered for laser treatment are pre-screened as outlined above. We also make
sure that any drugs they are taking will not significantly delay healing. Striae (stretch
marks) are a very troublesome problem subsequent to steroid treatment. No one technology
works as well as we would like.
Collagen has been used for years to fill in scars in the skin, often caused by acne or burns.
The use of collagen in lupus -- or any autoimmune disease -- has been quite controversial
for many years. Dermatologists who treat lupus patients with collagen have not seen an
increase in significant or unusual reactions, but caution is advised. And, although we pre-
test everyone for any allergic reaction, there also can be problems if a person is on high
doses of immunosuppressives or corticosteroids, since a false-negative test result may
occur. Recently, a new form of collagen derived from a human cell line has been
introduced, and no allergy pre-testing is required for its use.
Restalyne: The latest filler is Restalyne (pronounced REST-uh-lyn), a synthetic hyaluronic
acid gel which is injected into the skin in tiny amounts with a very fine needle. A similar
product has been injected into the joints of osteoarthritis patients. Restalyne is a natural
substance, so theoretically there is should be minimal or no allergic reaction. However,
since patients with lupus have increased levels of hyaluronic acid, or mucin (a
characteristic of inflamed skin), we are proceeding carefully in treating such patients with
restalyne. So far in our practice we have treated six such people with extremely low
amounts of restalyne to monitor their responses. Over time, we feel this bioengineered
filler will prove very useful -- especially for people who have scars that lasers cannot
totally fill in.
Botox: As for Botox, we really don't have any issue with this as a skin treatment. In 2002
the FDA granted approval to use Botox Cosmetic (Botulinum Toxin Type A) as a
treatment to reduce the severity of frown lines for up to 120 days. Small doses of the
injectable form of sterile, purified botulinum toxin block the release of a chemical called
acetylcholine by nerve cells that signal muscle contraction. The product is a protein
complex produced by the bacterium Clostridium botulinum, which contains the same toxin
that causes food poisoning, although there is no chance of contracting botulism from
Botox injection. Since this treatment basically just paralyzes the muscles, no allergy testing
is required, and it does not appear to have any side effects when used prudently.
Thermage (pronounced thur-MAJ), approved by the FDA in 2002, uses heat from a radio
frequency device to tighten or lift the skin. It's currently being used in the eye and forehead
areas. Heating up the skin causes new collagen to form -- a process similar to laser
treatments. But thermage uses deeper, radio-frequency-produced heat rather than light-
induced heat. So, theoretically, there is a greater possibility of reactivating skin
involvement of lupus. Clinical trials are needed to determine if this treatment is safe for
people with lupus.
Microdermabrasion is a relatively harmless procedure which addresses superficial skin
problems such as blemishes and pore size. It should be used with caution to avoid potential
reactivation of cutaneous lupus.
Finally, doctors are using injections of detergent-based sclerosing agents, or
sclerotherapy, to reduce spider veins in the legs. Patients with lupus will be more
susceptible to side effects such as local reactions and infection. This procedure is not
recommended for larger blood vessels. Combination treatment with laser technology is
sometimes helpful, but caution is advised until more studies are done.

NOTE: Any patient with clotting disorders, including the anti-cardiolipin
antibody/antiphospholipid antibody and lupus anticoagulant should avoid these
procedures.
You are correct that you need to protect yourself from excessive exposure to the sun. First,
you need to get a wide brimmed hat (I know it is not the best look, but neither is the skin
rash). If possible, try to have an umbrella to shade you. You need to use sunscreen on any
and all exposed areas and reapply as needed. There is also a company called Coolibar.
They offer a unique range of sun protective clothing, sun hats, sun protective swimwear
and multi-spectrum sunscreens. You may want to check out their website. Check with your
physician before the concert to make sure that everything is going well with you ... and for
any last minute advice.
              Links                                 Links

LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus

LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus


LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus
LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus

LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus
LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus

LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus
LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus


LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus
LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus
LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus

LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus

LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus
LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus


LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus
LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus

LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus




LFA Web Site: How Lupus Affects the
     Body (Lupus and the Skin)        LAF Web Chat: Skin Disease in Lupus
Links   Links
                                   LFA Web Site: Living with Lupus
LFA Web Chat: UV Light and Lupus        (Sensitivity to Light)




                                   LFA Web Site: Living with Lupus
LFA Web Chat: UV Light and Lupus        (Sensitivity to Light)
LFA Web Chat: UV Light and Lupus
LFA Web Chat: UV Light and Lupus
                              Questions




What is the difference between drug-induced lupus (DIL) and
systemic lupus?


What drugs are most commonly associated with DIL?




Are there other drugs that might cause DIL?
Should people diagnosed with SLE or Cutaneous lupus avoid taking
the drugs associated with drug-induced Lupus?

How soon after taking the drug do the symptoms appear?




What causes lupus?




Is it possible that DIL can last for years or never go away after
stopping the medicine?




Is it possible to have a drug-induced lupus without a positive ANA
reading?
                                     Answers
Systemic lupus is irreversible, Drug-induced lupus is a lupus-like disease caused by
certain prescription drugs. The symptoms of drug-induced lupus are similar to those
of systemic lupus, but only rarely will any major organs be affected. Drug-induced
lupus is more common in men because they are given these drugs more often;
however, not everyone who takes these drugs will develop drug-induced lupus. The
lupus-like symptoms usually disappear within six months after these medications are
stopped. The ANA may remain positive for years.
The drugs most commonly connected with drug-induced lupus are hydralazine (used
to treat high blood pressure or hypertension), procainamide (used to treat irregular
heart rhythms), and isoniazid (used to treat tuberculosis).
The overwhelming majority of cases of DIL are due to one of the 5 drugs mentioned
earlier. There are other drugs, which might POSSIBLY be associated, but there is
not yet definite proof of an association between them and drug-induced lupus.
Check with your doctor to see if you are on any medication that might possibly
explain your symptoms.
Most of the drugs associated with DIL can be safely used in people with SLE or
cutaneous lupus if there are no suitable alternatives.
Drug-induced lupus requires months to years of frequent exposure to a drug before
symptoms appear.
No one knows what causes lupus. Scientists think that people are born with the
genes to develop lupus and that something brings on or “triggers” the disease and
symptoms. However, a combination of genetics (heredity), environment, and
hormones is involved.
It would be very rare to have drug-induced lupus that lasts for a long time after the
drug was withdrawn. This may happen occasionally with sulfa drugs. However, in
those cases, what is probably happening is that the sulfa drug triggered the onset of
lupus, but that the lupus was probably going to develop anyway. This might not
really be considered drug-induced lupus in the classical sense. Indeed, many people
with pre-existing lupus will have lupus flares triggered by sulfa drugs.
It is rare, but possible, to have lupus with a negative ANA. Most people with ANA-
negative lupus have a positive test for anti-Ro (also known as anti-SSA). Many
people who are told they have lupus with a negative ANA might have another
reason for their symptoms, however. It is important to rule out another cause for the
illness before deciding that a person has lupus with a negative ANA, especially if it
is persistently negative.
Links
                             Questions




Is there any truth to the claims being circulated on the Internet that
lupus is caused by the artificial sweetener, aspartame?




I was diagnosed with systemic lupus. Are there any do's or don'ts
with regards to?
Will eating nightshade vegetables increase my lupus flares or joint
pain? It seems that every place I read about this has a different
opinion about this.
How can I tell if my lupus is active?




When should I call the Doctor?




How long will a flare last? How long will a remission last?


I've had lupus for 2 years and haven't had a remission yet. Is this
possible?




Will I become crippled and end up in a wheelchair?
Is there anything I can do to alleviate the pain when the pills don't
seem to work and I can't get in to see the doctor for a few days?


I have heard that hair dyes may trigger flares in lupus. Does this
mean I should stop dying my hair?




What can I do about the weight gain brought on by the prednisone?
Is massage safe for people with lupus?




Is acupuncture helpful to people with lupus?




Are there any restrictions on physical activity for lupus patients?
Are there any exercises that have been particularly beneficial for
those diagnosed with lupus?




I need some nutrition advice, as well as advice on vitamins, foods,
etc.
Is the use of tanning beds okay for people with lupus?




Is there anything I can add to my diet that could lower the
inflammation that lupus causes?
Is dehydratin, etiher mild or moderate, a greater potential problem
for those with lupus than for the general population? And can
being dehydrated cause lupus to flare?
                                               Answers
We are aware there is an email message circulating on the Internet warning individuals with lupus
about dangers associated with using the artificial sweetener aspartame. The Lupus Foundation of
America consulted with the chair of the LFA Medical Council, Evelyn Hess, MD, MACP, MACR.
Dr. Hess is one of the nation's leading researchers in the field of lupus specializing in environmental
influences. According to Dr. Hess, there is, as of now, no specific proof of an association with
aspartame as a cause or worsening of SLE. People with lupus should always consult with their
physician before making any changes in their medical treatment, diet, exercise or other routine based
on information received via the Internet or other sources lacking known credentials.
How May Lupus Affect My Life?
Having lupus can make the demands of everyday life challenging. When lupus is active, symptoms of
joint stiffness, pain, extreme fatigue, confusion, or depression can make even simple tasks difficult,
and sometimes impossible. And, because you may not have any visible signs of disease, the people
around you may not realize how much discomfort and pain you are experiencing, or they may not
know that you are sick at all.

You should not ignore the limitations that come with this disease. But there are steps you can take to
stay active with work, relationships, and events that enrich your life. These actions and strategies can
lighten the burden of your illness and allow you to lead a life of accomplishment and achievement.
Diet
There is no special diet for lupus, despite the numerous claims on the Internet and in various books
and other publications. In general, you should try to eat a nutritious, well-balanced, and varied diet that
contains plenty of fresh fruits and vegetables, whole grains, moderate amounts of meats, poultry, and
oily fish, as fish oil has been found to help reduce inflammation.

Omega-3 fatty acids found in oily fish appear to decrease the risk of coronary artery disease and may
also protect against irregular heartbeats and help lower blood pressure. For these reasons, omega-3
fatty acids are important for women with lupus, who are at a 5-10-fold higher risk for heart disease
than the general population.

One food for people with lupus to avoid is alfalfa. Alfalfa tablets have been associated with reports of
a lupus-like syndrome or lupus flares. The lupus-like effects may include muscle pain, fatigue,
abnormal blood test results, changes in how the immune system functions, and kidney problems.
These reactions may be due to the amino acid L-canavanine (found in alfalfa seeds and sprouts, but
not in leaves), which can activate the immune system and increase inflammation.

If you plan to add herbs, dietary supplements, or vitamins to your diet you should first discuss your
decision with your lupus doctor. This is especially important as herbs or supplements may interact
with medicines used to treat lupus. Herbs or supplements should never be used to replace medicines
prescribed to control symptoms of lupus or medication side effects.

You may have to cut back or eliminate certain items from your diet because of the medications you are
taking, or because of the damage that lupus has done to certain parts of your body.

• Moderate use of alcohol is usually not a problem for people with lupus, but alcohol can lower the
effectiveness of some of the drugs used to treat lupus, can cause new health problems, and can make
Exercise
Just like everyone else, people with lupus need to exercise regularly or engage in some kind of
movement, and most people with lupus can take part in some form of activity. All exercise plans
should be discussed with your physician or exercise specialist in order to maximize results and
minimize possible harm.

Activities such as walking, swimming, bicycling, low-impact aerobics, certain types of yoga, Pilates,
stretching, or using an elliptical exercise machine will strengthen your bones and tone your muscles
without aggravating inflamed joints, while also helping to lower the risk for developing osteoporosis.
It’s also a good idea to vary the exercises, so that different muscle groups all get a regular workout.

If you are experiencing swollen joints or muscle pain, you should avoid or at least limit activities that
may be demanding on joints and muscles, such as jogging, weightlifting, or high-impact aerobics.

If you find that you tire easily when you exercise, you should pace yourself. The most important thing
to remember is to not give up exercising, as muscles that are not used will quickly become weak.

Regular exercise and even simple low-impact movement will:

• reduce or minimize stress
• help to keep your heart healthy
• improve muscle stiffness
• increase muscle strength
• help prevent osteoporosis
• increase your range of motion
Fatigue
As many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is
their main symptom and can be debilitating, even to the point of forcing them to stop working. It is
unclear why extreme fatigue occurs in so many people with lupus, but disease activity, pain, age, and
medicines being taken, as well as poor physical and mental health and lack of good social support, all
appear to play a role.
In addition, poor coping strategies, feelings of helplessness, depression or anxiety, smoking, and lack
of exercise have all been found to be related to lupus fatigue. Before the physician can conclude that
fatigue is related to these factors, any “treatable” causes of fatigue (for example, anemia, kidney
failure, or hypothyroidism) need to be ruled out.

Physicians experienced with lupus recognize the harmful and even destructive effects that extreme
fatigue can have, and research is underway to learn more about how to treat the problem. Getting
regular exercise and being part of a support group have been found to help. By making some
adjustments, people with lupus-related fatigue will be less likely to push themselves to exhaustion.
themselves to exhaustion.
Rest
Getting the proper amount of rest is extremely important for people with lupus, especially during
periods of disease activity (flares). Damaged and inflamed muscles and joints require rest to heal. Rest
is also vital in reducing fatigue. Although everyone has his or her own particular sleep requirements,
at least seven hours of sleep a night is recommended for people with lupus. It is also important to be
aware that too much sleep isn’t healthy, either. Spending all day in bed may make muscles weaker,
which can contribute to feelings of fatigue. Napping during the day may be helpful and even necessary
when lupus activity is causing a flare. Try to allow extra time in your daily schedule for rest.
Medications
Medications are an important part of managing lupus. Physicians today have many types of drugs
available, which has greatly improved the potential for effective treatment and excellent results.
However, because lupus is different for each person, it can take time for your doctor to find the best
combination of medications for you. Also, because lupus is an unpredictable disease, you may find
that your symptoms sometimes improve and sometimes worsen. But don’t be discouraged! Your
doctor can adjust your medications accordingly in order to be sure that your treatment is as successful
as possible.
Work
No matter the area of expertise, our achievements and accomplishments in the workplace contribute to
our self-image and identity. It’s not surprising that people with lupus, especially soon after being
diagnosed, often wonder if their illness will affect their ability to contribute in the workplace.

Many people with lupus are able to continue to work, although they may need to make changes in their
work environment. Flexible work hours, job-sharing, and telecommuting may help you to keep
working. It may be helpful to begin to make such arrangements soon after you have been diagnosed
with lupus.
The nightshade vegetables include white potatoes, tomatoes, peppers (sweet and hot), and eggplant.
There are others, but they are not foods that are typically consumed in the U.S. While there is
anecdotal evidence that some of these foods can be related to inflammation, there is no solid scientific
evidence to support this concept. My advice would be for people to keep track of when they eat these
foods, and to look for a pattern between consumption and a flare. They would want to observe a link
between a particular food and a flare on multiple occasions -- not just a few times. If there does seem
to be a connection, then by all means, a person could avoid one/all of the nightshade vegetables
without creating any nutrient deficiencies. Peppers, for example, are high in vitamin C, but so are
plenty of other foods (i.e. citrus), so limiting peppers in your diet isn't going to cause any problems.
Bottom line -- there isn't any good scientific evidence linking nightshade vegetables to
inflammation/flares, but if people believe there is an association for them, then it isn't going to hurt
them to omit the offending food from their diet.
When a lupus flare occurs, people will usually notice a return of the symptoms they experienced
previously, but sometimes they will notice new symptoms. These may include, but are not limited to:

• Fever
• Swollen joints
• Increase in fatigue
• Rashes
• Sores or ulcers in the mouth or nose
• A temperature over 100 degrees, not due to an infection, is often a helpful sign in identifying a
flare.
You should call the doctor about any change in symptoms or worsening of your lupus as soon as
possible. You should also be aware that there are certain symptoms that may require that you see your
doctor immediately. These symptoms or signs include the following:

• Blood in your stool or vomit -you should call your doctor and let him/her know immediately
• Severe abdominal pain
• Chest pain
• Seizures
• New onset of a fever or if your fever is much higher than it usually is
• Excess bruising or bleeding anywhere on your body
• Confusion or mood changes
• A combination of symptoms such as severe headache with neck stiffness and fever. This
combination could be serious and you need to let your doctor know immediately.

There are other reasons why you should call your doctor. For example, if the doctor has put you on a
new medication and you've been taking it as prescribed, and for the period of time prescribed and your
symptoms are no better or they are worse, you need to let the doctor know.
There is no way of predicting how long a flare will last when it comes, nor is there any way of
predicting how long a remission will last when it comes. It is frequently said about lupus that the only
thing that is predictable about lupus is its unpredictability. So we have no way of forecasting how long
a flare will last or how long a remission will last. Sometimes changes in symptoms or lab tests predict
future changes.

Yes. Lupus takes a highly variable course. Some people will have a course where their lupus flares-up
and then simmers down and goes into remission. On the other hand, some have a more chronic (long-
lasting) course where they have a chronic state of flare and have symptoms day-in and day-out.
People are frequently concerned that the arthritis associated with lupus will result in crippling
deformities. Lupus arthritis generally does not cause deformities of the joints. Occasionally, avascular
necrosis of bone, related to steroids and lupus, may occur and require total hip or knee replacement
surgery.
If you are like most people with lupus, you have experienced pain at some time, especially in your
joints and muscles, or in the form of headaches. However, the types of pain associated with lupus
usually go away when the inflammation and disease activity are brought under control.

Chronic and often severe muscle pain is the main symptom of fibromyalgia, a disease that affects
about 30 percent of people with lupus. Although fibromyalgia is still not well understood, its diagnosis
is based on widespread and often extreme pain and sensitivity at 18 “tender points.” These points
occur on both sides of the body at the same time, in the areas of the neck, shoulders, chest, hips, knees,
and elbows.

A variety of medicines can help ease pain caused by lupus and fibromyalgia. More information about
medicines used to treat pain is available in the LFA publication, “Treating Lupus.” Pain medicines are
helpful, and in many instances necessary. But, because there are always risks and side effects, it is
good to know some other approaches to pain relief.

• Heat and/or cold applications are often recommended for different kinds of joint and muscle pain.
Moist heat soothes painful joints much better than dry heat, so soaking in a hot tub, sauna, or
whirlpool, using a moist heated towel, or taking a hot shower can be helpful. Ice or cold applications
are advisable only for strained or twisted muscles or injuries during the first 36 hours after the injury.

One study indicated an association between the use of hair dyes and lupus symptoms, but subsequent
studies found no association and no recent evidence has been reported. The initial study findings are of
Increased appetite is well most physicians do not feel corticosteroid risky for people with lupus.
uncertain significance andrecognized as a side effect ofthat hair dye is therapy. Often times, just being
aware that this increase in appetite may occur with the steroid therapy, is the first step towards
managing the potential weight gain. If you have to go on steroids or if you have to increase your
dosage of steroids, you may want to consider planning out a healthy diet during the time you're taking
steroids and making sure that you stick to it. During those times, however, when you're really hungry,
here are some things you can do to combat the munchies:

• Drink a large glass of low sodium vegetable juice cocktail
• Eat a bowl of air popped or low fat microwave popcorn
• Eat a plate of raw vegetables dipped in fat-free sour cream
• If you can, go for a walk
• Drink a cup of decaffeinated flavored coffee with low fat milk

These are low fat substitutions, which can reduce your overall caloric intake and hopefully curb your
weight gain. Taking steroids can also increase water weight gain. You can help to cut down the
amount of fluid retention by reducing your sodium and/or salt intake. This can be accomplished by
avoiding processed or convenience food whenever possible. If you are going to be eating convenience
or processed foods, check the label and make sure that no item contains more than 200 mg of sodium
per serving. Or if you are eating a whole frozen dinner, for example, try and stay between 500 and 700
In general, massage therapy will have no negative impact on cutaneous lupus. However, there are a
few specific instances where caution is advised. Thus, intense or deep, vigorous massage may induce
subcutaneous bleeding or visible bruising. This may invoke koebnerization, the process whereby
cutaneous lupus may be produced at the sites. Another issue is the use of various oils during massage.
If they induce an allergic reaction, cutaneous lupus may also activate at the sites, also due to
koebnerization. While these issues may be uncommon, and the benefit of massage for musculoskeletal
disease is positive, it is worthwhile for cutaneous lupus patients to be aware and prudent.
There is some evidence that acupuncture can provide relief from arthritis pain, and that meditation and
biofeedback techniques can offer relief from stress and help with pain management. Most alternative
and complementary practices, however, have not been through the scientific testing and clinical
research that all conventional medicines undergo, so it is difficult to know their effectiveness in
treating lupus. Speak to your physician about its appropriateness, and then get recommendations for a
qualified practitioner, preferably one who has worked with people with lupus before you.
Exercise is to be encouraged in people with lupus, particularly during a time when lupus symptoms are
not pronounced. Walking, swimming, bicycling and other aerobic activities are good. Light weights
are also good along with resistance. But keep in mind that they will want to exercise in moderation
and avoid exercising to the point of exhaustion. Regular exercise will help them function better and
improve fatigue and your sense of well being. The Lupus Foundation of America in Piedmont, North
Carolina has put together a great DVD called The Right Moves for Lupus. It costs about $15 and can
be purchased through their website.
At this time, there is no specific lupus diet. Most people with lupus do not require special diets. It is
important to maintain a nutritionally sound and well balanced diet. A proper diet ensures that we
consume all of the necessary vitamins, minerals, and supplements. However, if your doctor feels it
would be helpful for you, it may be suggested that you try a reducing diet, salt free diet, or low protein
diet or combination of the three. If you have kidney involvement, a salt free low protein diet may be
helpful in minimizing water retention.

A healthy intake of vitamins and minerals is important for everybody. If you eat a good variety of
nutritious foods to include fresh fruits and vegetables, fiber rich cereals and grains, and lean cuts of
meat then you are probably getting all of the vitamins and minerals you need to be healthy. There's
little scientific evidence to prove that taking in extra amount of micronutrients such as through
supplementation, can help improve your lupus.
In general those wiht lupus should not use tanning beds. The bulbs in tanning beds produce ultraviolet
light rays. It is the ultraviolet light rays that cause the skin to tan. The majority of people with lupus
tend to be unusually sensitive to ultraviolet light. That is to say, exposure to excessive ultraviolet light,
especially the UVB sunburning rays, can cause lupus skin lesions to appear, or make existing lupus
skin lesions worse. Ultraviolet light can also activate the internal, or systemic, manifestations of lupus
in some people.

There have been many examples of lupus skin disease patients who were thought to have psoriasis
instead, and were then treated for psoriasis in medical phototherapy cabinets that are similar to tanning
beds. A number of these people almost died from severe activation of their systemic lupus following
such mistaken treatment.

Some research suggests that very long ultraviolet light wavelengths, in what is called the "UVA-1"
range, can improve certain forms of lupus skin disease and mild forms of systemic lupus. This
research has been somewhat controversial, because other research has found that higher doses of the
same UVA-1 wavelengths are capable of aggravating the systemic manifestations of lupus. Therefore,
the biological effects that people with lupus might experience (i.e. getting worse or better) are likely to
There has been considerable interest in the the different wavelengths of ultraviolet light autoimmune
be critically dependent upon the amount of influence of dietary factors on many differentenergy that
diseases, including lupus. Much of this interest has focused on omega-3 fatty acids because of their
potential effects on inflammation. Animal fats are a source of omega-6 fatty acids. Fish, flaxseed and
canola oils, and green, leafy vegetables are sources of omega-3 fatty acids. The relative amount of
omega-6 and omega-3 fatty acids in the diet affects the types of prostaglandins and other compounds
the body produces that influence the inflammatory response. The omega-3 fatty acids in particular
result in the production of more anti-inflammatory compounds.

There has been one large study of dietary factors in relation to lupus disease activity. In this study of
216 lupus patients in Japan conducted by Yuko Minami, M.D., there was no association found
between intake of total fat, type of fat, or omega-3 fatty acids and subsequent disease activity over a
four-year period. However, higher intakes of antioxidants (for example, vitamins C and E) were
associated with decreased disease activity.

Thus, although currently available studies suggest that diets high in antioxidants -- and possibly omega-
3 fatty acids -- may help lupus symptoms, this is still an unanswered question. The role of antioxidants
in disease progression and activity is a relatively under-studied area of research.
People with lupus could be more susceptible to the damaging effects of dehydration for the following
reasons:

• Dehydration can worsen kidney function, a problem in particular for those with any kidney disease or
involvement.

• Some people with lupus have autonomic nerve involvement resulting in hypotension, meaning that
their blood pressure drops when they simply stand up. Dehydration could definitely lead to
complications for them.

• Being dehydrated may increase fatigue.

• Being dehydrated may have a negative impact on the body’s ability to clear medication from the
system.

• In addition, prolonged dehydration can lead to an increased heart rate and could perhaps stress the
body in a way that could increase the chances for, or the effects of a flare.
Links   Links
                                         LFA Web Chat: Diet/Nutrition and
LFA Web Site: Living with Lupus (Diet)         People with Lupus
                                       LFA Web Chat: New Year's
LFA Web Site: Living with Lupus    Resolutions & Lupus: What Are The
   (Exercise and Movement)        Best Ways To Stay Healthy & Exercise




LFA Web Site: Living with Lupus
   (Exercise and Movement)
   LFA Web Site: Living with Lupus
      (Exercise and Movement)




   LFA Web Site: Living with Lupus




                                         LFA Web Chat: Diet/Nutrition and
LFA Web Site: Living with Lupus (Diet)         People with Lupus
LFA Web Site: Living with Lupus (Pain)




                                         LFA Web Chat: Diet/Nutrition and
LFA Web Site: Living with Lupus (Diet)         People with Lupus
     The Right Moves for Lupus




                                         LFA Web Chat: Diet/Nutrition and
LFA Web Site: Living with Lupus (Diet)         People with Lupus
                                         LFA Web Chat: Diet/Nutrition and
LFA Web Site: Living with Lupus (Diet)         People with Lupus
Links   Links
     LFA Web Chat: New Year's
 Resolutions & Lupus: What Are The LFA Web Chat: Eating Health, Weight
Best Ways To Stay Healthy & Exercise    Management and Lupus
     LFA Web Chat: New Year's
 Resolutions & Lupus: What Are The LFA Web Chat: Eating Health, Weight
Best Ways To Stay Healthy & Exercise    Management and Lupus
     LFA Web Chat: New Year's
 Resolutions & Lupus: What Are The LFA Web Chat: Eating Health, Weight
Best Ways To Stay Healthy & Exercise    Management and Lupus
     LFA Web Chat: New Year's
 Resolutions & Lupus: What Are The LFA Web Chat: Eating Health, Weight
Best Ways To Stay Healthy & Exercise    Management and Lupus
     LFA Web Chat: New Year's
 Resolutions & Lupus: What Are The LFA Web Chat: Eating Health, Weight
Best Ways To Stay Healthy & Exercise    Management and Lupus
                             Questions




Will I be able to have a family?

Will I live long enough to see my children grow up?
I have lupus and am pregnant with twins. I'm sure of the date I got
pregnant but the babies size on ultrasounds measure 4 weeks
smaller. Could that be from lupus or twins or am I just wrong on my
date?
I have done so much research on the effects of Imuran on fertility
and I can't find a definitive answer. Most sites speak of the MALE
fertility and not the female and how it is affected. These sites speak
about pregnancy only, not the actual effects of this drug on fertility
of a female. I am 40 years old and need to start Imuran or CellCept
to get off high steroids. I do not have children and wish to know the
answer to this ongoing question.




How long should one wait to get pregnant after completing the third
of three cytoxen infusions?
I am taking Plaquenil (200 mg) everyday. What are the risks
involved if I get pregnant while I am taking this medication. Should I
stop taking it? What are my options?
Can lupus affect your ovaries? In particular can it be causing cysts
to form on them?


Should people with lupus who want to eventually become parents
bank their eggs or sperm before taking cytotoxic drugs for
treatment?
                                               Answers

Planning a pregnancy and being pregnant are areas of family life that demand special considerations.
Although both men and women with lupus are normally fertile, a woman may not conceive if there
is inflammation anywhere in her body. Therefore, it is advisable to try to conceive when lupus is not
active. When women with lupus do become pregnant, 70 percent of pregnancies are successful.

Even so, all lupus pregnancies are considered high-risk. This does not mean that every woman with
lupus who is pregnant is in danger. It means that, because lupus is unpredictable, these pregnancies
need to be followed closely. The woman’s team of doctors should include a rheumatologist,
obstetrician, and high-risk pregnancy specialist (perinatologist), just in case any problems arise.
The majority of people living with lupus today, in fact 80-90% of them, can expect to live a normal
lifespan.

Twins can be smaller. But lupus pregnancy can be complicated by intrauterine growth restriction --
meaning that the placenta does not work as well as it is supposed to, and the babies are smaller as a
result.
There is no study that can definitively answer the question about azathioprine (Imuran) and
infertility. Many lupus patients do get pregnant after taking azathioprine, and it is not thought to be a
major issue with this agent. CellCept falls in a similar category; however CellCept should definitely
be stopped at least 90 days before attempting to conceive. Although most doctors are not
enthusiastic about continuing azathioprine during pregnancy if this can be avoided, it has been used
safely in some patients throughout pregnancy, and there are fewer worries if a patient becomes
accidentally pregnantE. B. Clowse, MD, MPH Assistant Professor, Division of Rheumatology at
According to Megan on azathioprine.
Duke University Medical Center, there are two main factors to consider when you, as a lupus
patient, decided to conceive.

First: How active is my lupus? If you have had significant lupus activity within 6 months of
conceiving, you are at higher risk for pregnancy complications, including miscarriage, premature
birth, and preeclampsia (toxemia).

Second: Are the medications I need for my lupus safe during pregnancy? Cyclophosphamide
(Cytoxan) is known to cause abnormalities in babies exposed to it during the first trimester.
Mycophenolate mofetil (Cellcept) is also associated with poor pregnancy outcomes and fetal
abnormalities. Most doctors consider Azathioprine (Imuran) an alternative that is safer for the fetus
during pregnancy.

If you have had lupus that was active enough to require cyclophosphamide, it would be wise to avoid
pregnancy for at least 6 months after your lupus has become quiet and you have been off this drug. I
recommend getting on a stable regimen of medication that are safe for pregnancy prior to trying to
conceive. It is very important that you discuss your desire to get pregnant with your rheumatologist.
Plaquenil should be continued during pregnancy. There is no known danger to the fetus. In fact,
because Plaquenil helps to control disease activity, pregnancies do better when the mother continues
her Plaquenil -- there is less preterm birth.
Yes, a recent study that was done and presented at the American College of Rheumatology (ACR)
meeting did show that women with Systemic Lupus erythematosus (SLE) are more likely to have
ovarian cysts.
As with many things in medicine, this is a matter of risk vs. benefit. For both men and women, the
risks of infertility with cyclophosphamide (Cytoxan®) depend on the age of the person, the dose of
cyclophosphamide, and whether there have been any additional medications or medical problems
related to fertility (for example, polycystic ovarian syndrome, endometriosis, late onset of menses or
problems with the veins of the spermatic cord).
Age. In the only clinical trial to prospectively evaluate the effects of cyclophosphamide on fertility in
women, after age 30 virtually all women in the study lost their menstrual periods when taking the
National Institutes of Health cyclophosphamide regimen. In the single published article that studied
cyclophosphamide treatment and fertility in men, the risk of infertility also was shown to rise, at age
24.
Dose. Although this information comes mostly from animal studies, it provides the rationale for
stopping the function of the ovaries or testes during treatment with cyclophosphamide. If the ovaries
or testes are not functioning, the blood flow is reduced, so the amount of cyclophosphamide
exposure should be lower. Studies we have done using lupron (a naturally occurring hormone that
influences the release of testosterone and estrogen in the body) to stop ovarian function have shown
that menstrual periods can be preserved, even in women over age 30. Estrogen-containing birth
control pills also have been used to stop ovarian function, but should not be taken by women with
hypertension and antiphospholipid antibodies.

The SELENA (Safety of Estrogen in Lupus Erythematosus — National Assessment) study showed
that, although birth control pills can be used in women with kidney disease if their high blood
pressure is under control, they should not be used when lupus disease is active. In men, testosterone
Other factors. Ovarian or testicular benefit in one small study.
supplementation was shown to be of problems that can occur independent of lupus or
cyclophosphamide also add to the problem. While it has been reported that fertility is not decreased
in women with lupus, we have data showing later start of menstrual periods, fewer pregnancies and
earlier menopause—all occurring before diagnosis or treatment of lupus. Whether or not this
represents sub-clinical disease, it is directly in opposition to the prevailing belief that excess
estrogen is "causing" lupus or is important in initiating lupus.

So, the answer for whether men should bank sperm before taking cyclophosphamide for lupus is a
definite "yes" -- provided they can afford it. For example, at our institution, the cost to maintain
banked sperm is $250 each year and insurance generally won't cover the cost.

For women, the question is much harder to answer. To bank eggs requires taking large doses of
estrogen to harvest the eggs. Also, unfertilized eggs can be frozen but they don’t preserve well and
certainly aren’t as good as fertilized eggs. The cost of the procedure and medical risks are both high.
And, unless the woman already has a long-term partner and freezes fertilized eggs, there is less
possibility for success with in vitro fertilization down the road.
            Links                              Links




LFA Web Site: Coping with Lupus
        (Pregnancy)               LFA Web Chat: Pregnancy and Lupus
LFA Web Site: Coping with Lupus
        (Pregnancy)               LFA Web Chat: Pregnancy and Lupus


LFA Web Site: Coping with Lupus
        (Pregnancy)               LFA Web Chat: Pregnancy and Lupus




LFA Web Site: Coping with Lupus
        (Pregnancy)               LFA Web Chat: Pregnancy and Lupus




LFA Web Site: Coping with Lupus
        (Pregnancy)               LFA Web Chat: Pregnancy and Lupus

LFA Web Site: Coping with Lupus
        (Pregnancy)               LFA Web Chat: Pregnancy and Lupus
LFA Web Site: Coping with Lupus
        (Pregnancy)               LFA Web Chat: Pregnancy and Lupus




LFA Web Site: Coping with Lupus
        (Pregnancy)               LFA Web Chat: Pregnancy and Lupus
             Links                  Links




LFA Web Chat: Reproductive Health
          and Lupus
LFA Web Chat: Reproductive Health
          and Lupus


LFA Web Chat: Reproductive Health
          and Lupus




LFA Web Chat: Reproductive Health
          and Lupus




LFA Web Chat: Reproductive Health
          and Lupus

LFA Web Chat: Reproductive Health
          and Lupus
LFA Web Chat: Reproductive Health
          and Lupus




LFA Web Chat: Reproductive Health
          and Lupus
                             Questions




How is lupus treated?

I don't want to go on prednisone. Are there any other treatments
available?


Does the LFA have any recommendations regarding alternative and
unproven treatments that are often advertised?




Has the use of Imuran been linked to cancer (particularly sarcoma)
in those with lupus?

I have done so much research on the effects of Imuran on fertility
and I can't find a definitive answer. Most sites speak of the MALE
fertility and not the female and how it is affected. These sites speak
about pregnancy only, not the actual effects of this drug on fertility
of a female. I am 40 years old and need to start Imuran or CellCept
to get off high steroids. I do not have children and wish to know the
answer to this ongoing question.
I have read on this site and in other sources that patients with lupus
should avoid sulfa drugs (sulfonamides). The example given is
usually an antibiotic such as sulfamethoxazole. There are different
subtypes of sulfonamides which include commonly used drugs such
as glyburide, hydrochlorothiazide, brinzolomide and celecoxib.
There is evidence to suggest although controversial that an allergy
to an antibiotic sulfonamide does not increase your risk of having
an allergy to non-antibiotic sulfonamide. Can you tell me if all
sulfonamides should be avoided in SLE and if so what is the
evidence that supports this?
What is IVIG and is it helpful for people who have weak immune
systems with lupus?

My understanding is that lupus patients are at increased risk of
heart disease and strokes. If this is correct, is it reasonable to start
statin therapy?




Does long-term prednisone use cause diabetes?




Are there medications that can be harmful to my lupus and cause
the disease to get worse?

I am taking 400 mg of Plaquenil daily and was wondering what if
any are the interactions of taking Plaquenil and drinking alcohol.
Is it true people with lupus should avoid high blood pressure
medicine, and look for more alternative approaches to build their
overall immunity?




Can you please tell me about the efficacy and use of Rituximab in
people with Systemic Lupus? I have had a recent severe flare which
included brain involvement. We hope this tx will help with my CNS
symptoms.




Is it safe to take beta blockers if you have lupus?




Can you take Premarin when you have lupus?




What side effects can I expect from taking steroids?
I know that Plaquenil helps ease inflammation in the body, but does
it lower the Westergren Sed rate?
                                            Answers
There are many categories of drugs for the treatment of lupus. Of all these drugs, only a few are
approved specifically for lupus by the Food and Drug Administration (FDA): corticosteroids,
including prednisone, prednisolone, methylprednisolone, and hydrocortisone; the antimalarial,
hydroxychloroquine (Plaquenil®); and aspirin. However, many medications are used to treat the
symptoms of lupus.
In addition to corticosteroids, lupus can be treated with non-steroidal anti-inflammatory drugs,
anti-malarial medications, and chemotherapy drugs. There can be situations where steroids are
the best choice of therapy and the other medications are not indicated or are ineffective.

The LFA is frequently asked about alternative therapies for the treatment of lupus. Although we
remain hopeful that newer more effective therapies will be developed, we must be cautious
regarding products that have not been approved by the Food and Drug Administration (FDA).

Many patients are concerned about the risk of cancer after having lupus for a long time, or after
being treated for many years with immunosuppressive drugs such as Imuran. A study including
almost 10,000 patients with lupus found that the risk to develop cancer is mostly related to non-
Hodgkin's lymphoma, which affects the lymph system, lung cancer, and liver and bile duct
cancers. Smoking increases the risk for cancer in lupus patients, just as it does in other people.
So far, there is no good evidence for a link between Imuran and cancer in lupus patients.

There is no study that can definitively answer the question about azathioprine (Imuran) and
infertility. Many lupus patients do get pregnant after taking azathioprine, and it is not thought to
be a major issue with this agent. CellCept falls in a similar category; however CellCept should
definitely be stopped at least 90 days before attempting to conceive. Although most doctors are
not enthusiastic about continuing azathioprine during pregnancy if this can be avoided, it has
been used safely in some patients throughout pregnancy, and there are fewer worries if a patient
becomes accidentally pregnant on azathioprine.




Not all lupus patients need to avoid sulfa-containing antibiotics but there is a high incidence of
skin rash and other side effects including lupus flares in patients with lupus. My advice to
patients is that if you have tolerated them in the past you are probably OK. If you have never
tried one, it may not be worth the risk, given so many other antibiotic choices. Not all sulfa-
containing drugs are implicated in causing side effects in lupus patients. However, everyone is
an individual, and it is not always predictable which medicines will cause allergic reactions or
other side effects.
It is normal for the immune system to make antibodies against infections and another name for
these antibodies is immune globulin. IVIG stands for intravenous immune globulin, meaning a
big dose of antibodies given in the vein as an infusion. There are several roles that these
antibodies can play. First, they can protect against infections. Sometimes people with lupus are
on immune-suppressing treatments and could use some help to protect against infection. Also,
people with lupus sometimes have too much of some kinds of antibodies, called auto-
antibodies. This interferes with the healthy regulation of the immune system and can lead to
inflammation. It seems that IVIG can actually provide some "regulating" antibodies and calm
down an immune system that is causing too much inflammation under certain situations. IVIG
is often used for patients who have certain types of lupus manifestations, especially when these
do not respond to initial treatments. IVIG might also be used where there are concerns about the
need for more immune suppression in a patient who has had a great deal of immune suppression
already. IVIG is generally not given as a routine, continuing treatment in lupus, however
although this does happen in other disorders. Although this treatment can be very effective,
Until we better understand the reason that lupus patients are at increased risk for strokes and
heart attacks, we encourage doctors to treat all traditional cardiovascular risk factors such as
high blood pressure, high cholesterol, smoking, etc. It is reasonable to use statins to decrease
cholesterol levels.

Cortisone and its analogues are "stress hormones" that prime the body for times of challenge.
Thus, the rise in sugar in the body is a natural byproduct of a preparation for stress in tissues of
the muscles, brain, and heart for example. This is why an increase in the stress hormone results
in an increase of the body's stores of glucose. Long-term prednisone use can cause diabetes in
someone who has a tendency to be diabetic. Moreover, the higher the dose of prednisone, the
greater the likelihood that the blood glucose (sugar) level will rise. Obesity and a genetic
background that includes diabetes also gives a person a greater chance of developing diabetes.
There is no data to answer this question. Most medication interaction questions have never been
studied. There are very few drugs that are absolutely contraindicated for lupus patients.
Penicillin should be used with caution and sulfa drugs should be avoided. Even some drugs
which cause drug-induced lupus have been successfully used for certain lupus patients who
need them.

Clinical studies in lupus are lacking to answer general questions such as how do lupus patients
(as a group) respond to specific treatments. Patients are encouraged to learn about all the
potential side effects of medications that are prescribed for them, and to consider their own
personal medical history in deciding (with their medical team) what combinations of medicines
are best for them. Some of this will be to some extent trial and error, but it is always very
important to have an established relationship with a medical team so that full knowledge about
you, the individual, is factored into the plans.
Plaquenil is not particularly toxic to the liver. There is no known interaction between alcohol
and Plaquenil. So there is no specific contraindication to an occasional drink. Of course,
everything in moderation.
Absolutely not. Effective treatment of high blood pressure is an important measure in
preventing heart attacks and strokes, which occur more commonly in lupus. In addition, high
blood pressure can accelerate kidney failure in patients with lupus kidney disease. There are
effective medications that lower blood pressure that should be used in patients with lupus who
have high blood pressure. These medications do not have adverse effects on lupus activity or
immune function.
Rituximab is approved by the FDA for use in rheumatoid arthritis. Because it acts to suppress B
cells, (a kind of white blood cell that has an important role in lupus), it makes sense that this
agent is currently being tested now to see whether it is appropriate for use in lupus patients.
There are some reports about the use of Rituximab for some patients with lupus or similar
conditions, but it is not yet known how effective this is, we must wait for the results of current
studies. It is never optimal to be taking treatments that are not fully studied for your condition.
On the other hand, because there have been no new treatments approved specifically for lupus
in decades, it is not unreasonable for doctors to try some of the new immune system suppressors
that seem to work in rheumatoid arthritis, especially in patients with serious conditions for
whom the more usual treatments are not working. However, all medicines that suppress the
immune system have potentially serious side effects. Only your doctors can determine whether
the next step for you should be the use of this kind of treatment.
Beta blockers have once in a while been put on a list of agents which might cause drug-induced
lupus, usually in elderly people. However, this does not mean that they are not safe to use in
most lupus patients. Many antibiotics are also on that list, and we use them too. Beta blockers
are probably reasonably safe to use in most lupus patients. However, there are issues with
people who have other medical conditions which sometimes co-exist in lupus patients, so of
course the decision about an individuals risk needs to be weighed with their doctor.
Premarin is usually safe in that it is not known to induce lupus flares. An study sponsored by the
NIH and Office of Women's Health showed that there were not more serious flares among
patients taking Premarin than in those taking a "placebo." However, Premarin may not be the
best idea to start in a person with pre-existing heart disease. Lupus patients are at higher risk for
heart disease (atherosclerosis) than the general population. So a person and their doctor need to
weigh the risk for the individual in the decision to take Premarin or not. Interestingly, it might
be that Premarin would be protective against a longer term risk of developing heart disease,
although the information on that is not perfect. Premarin may also increase risk of blood clots,
so a lupus patient who either has the Antiphospholipid Syndrome and/or a history of
miscarriages or blood clots should not take it. In the NIH study mentioned above, people with
significant levels of Antiphospholipid antibodies were not allowed to be in the study.
Prednisone is a double-edged sword. It is a very effective anti-inflammatory agent in lupus, and
it works fast. But over time, the side effects of higher doses of the medication can be significant.
People taking steroids may have side effects that include weight gain (especially in the cheeks
and over the back of the neck), acne, hair thinning on the scalp, new facial hair (on the chin or
above the lips), mood swings and difficulty concentrating. Your doctor may also discover that
your prednisone has caused higher blood pressure, higher glucose levels and higher cholesterol.
Prednisone can also weaken bones and damage the blood supply to joints, which usually occurs
first in the hips.
The Westergren Erythrocyte Sedimentations Rate (ESR or SED rate) is a measure of how fast
red blood cells (erythrocytes) fall in a test tube and may indicate (indirectly some presence of
generalized inflammatory proteins in the blood. However, the ESR can be elevated from many
causes. It is not considered a particularly useful blood test or treatment target for lupus.
Plaquenil has two known mechanisms of action that are relevant to lupus. One is that it is a
mild inhibitor of activated blood fragments, called platelets, so it may help to protect against
excessive blood clotting. The second is that it inhibits proteins called toll-like receptors, which
may be involved in the hyperactive immune responses that occur in people with lupus.
          Links                              Links



                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment

                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment


                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment




                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment




                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment




                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment
                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment


                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment




                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment




                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment

                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment
                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment




                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment




                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment




                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment




                               LFA Web Chat: What Is New for Lupus
LFA Web Site: Treating Lupus        Research and Treatment
LFA Web Site: Treating Lupus
         Links             Links



LFA Web Chat: Medication
  Management and Lupus

LFA Web Chat: Medication
  Management and Lupus


LFA Web Chat: Medication
  Management and Lupus




LFA Web Chat: Medication
  Management and Lupus




LFA Web Chat: Medication
  Management and Lupus




LFA Web Chat: Medication
  Management and Lupus
LFA Web Chat: Medication
  Management and Lupus


LFA Web Chat: Medication
  Management and Lupus




LFA Web Chat: Medication
  Management and Lupus




LFA Web Chat: Medication
  Management and Lupus

LFA Web Chat: Medication
  Management and Lupus
LFA Web Chat: Medication
  Management and Lupus




LFA Web Chat: Medication
  Management and Lupus




LFA Web Chat: Medication
  Management and Lupus




LFA Web Chat: Medication
  Management and Lupus




LFA Web Chat: Medication
  Management and Lupus
                   Questions




Is any research being done on lupus?




Where is lupus being researched?




Lupus Registry and Repository
Neonatal Lupus Registry




Antiphospholipid Syndrome Registry




Fibromyalgia Family Study Registry
Does the Lupus Foundation of America (LFA) do
research?




How do I find out more about the LFA's Research
Grant Program?
                                               Answers
Yes, there is a good deal of interest in lupus. Research can be divided into two types: basic or
clinical. Much of the lupus research is considered to be basic, where scientists attempt to develop or
refine theories (concepts, beliefs, principles) of how the body works and how the immune system
functions. Basic research is conducted in the laboratory and generally does not involve the use of
human subjects. We are lucky to have animal models of SLE (mice with lupus) so that research into
the cause of lupus and better treatments can be investigated more easily.

Clinical research involves the study of humans and how they act or react to certain factors. It
includes applying or testing theories and evaluating their usefulness in solving clinical problems.
Each year the American College of Rheumatology publishes a listing of summaries (abstracts) of
research projects. In a typical year, there are over hundreds of research abstracts listed that pertain to
lupus. The majority of the studies are basic research. Published research studies can be found using
the National Library of Medicine's PubMed web site:
Lupus research is conducted by both public and private organizations, companies, universities and
colleges, as well as the federal government; which includes the National Institutes of Health (NIH),
the Department of Veterans Affairs (VA), the Centers for Disease Control (CDC), the Food & Drug
Administration (FDA), and the Military. The lead NIH institute for research on lupus is the National
Institute for Arthritis, Musculoskeletal and Skin diseases. This is commonly referred to as NIAMS,
and it is here where much of the federally funded research related to lupus originates.
In early 1996, the NIAMS established the Lupus Registry and Repository to study people with lupus,
and their families in order to identify genes that determine susceptibility to the disease. The high
prevalence of lupus among relatives of lupus patients suggests a genetic component for the disease.
However, genetic studies of lupus to date have been incomplete. The Lupus Registry and Repository
is located at the Oklahoma Medical Research Foundation in Oklahoma City, OK.

Dr. John Harley directs this extensive project. He and his associates collect and update clinical,
demographic and laboratory data on all patients with lupus and their families for the Lupus Registry.
Blood, cells, and DNA from these individuals are stored in the Lupus Repository for genetic testing.

They are seeking lupus patients who have two or more family members who have been diagnosed
with the disease. Families who qualify for the study receive a blood sample collection kit, a consent
form and a questionnaire. A blood sample is collected and completed materials are sent to Dr.
Harley and his associates for evaluation. Patients or physicians interested in participating should
contact:

Carisa Cooney, Kurt Downing, Jessica Lombard or a Recruiter
Oklahoma Medical Research Foundation
Lupus Multiplex Registry & Repository
825 NE 13th Street, MS #5
Oklahoma City, OK 73104
1-888-655-8787 (1-888-OK-LUPUS)
or (405) 271-7479
http://omrf.ouhsc.edu/lupus
Dr. Jill Buyon is the director of the NIAMS/HJD Neonatal Lupus Registry. The Registry includes
identifying and diagnostic information on mothers and their affected infants. The purpose of the
Registry is to facilitate access to patients by investigators conducting basic, clinical or
epidemiological research.
Please contact:

Jill P. Buyon, M.D., Director
or Peg Katholi, Coordinator
NIAMS/HJD Neonatal Lupus Registry
Hospital for Joint Diseases
301 East 17th Street, Room 1606
New York, NY 10003
Tel: (212) 598-6514
Fax: (212) 598-6449
E-mail : Peg.Katholi@med.nyu.edu
Robert A.S. Roubey, M.D. at the University of North Carolina, Chapel Hill directs the APS registry
scientists who will collect clinical, demographic and laboratory information on patients with clinical
signs of APS as well as people who have antibodies but have not yet developed any clinical signs.
Data will be made available to researchers and medical practitioners concerned with diagnosis and
treatment.

Please contact:

Robert A. S. Roubey, M.D.
University of North Carolina,
Chapel Hill, NC
Tel: 919-966-0572
Email: apscore@med.unc.edu
Dr. Jane Olson will lead this study of patients in families with at least two FMS-affected individuals.
Families are eligible for participation in this study if at least two closely related family members
have Fibromyalgia Syndrome (FMS) and if at least one of these has no other major rheumatologic
disease. Clinical, demographic, and laboratory data on FMS will be collected. In addition, DNA will
be collected so that genetic linkage studies may be performed.

Please contact:

Dr. Jane Olson
Case Western Reserve University
Cleveland, OH
Tel: 216-778-4589
Email: ffs@darwin.cwru.edu
A primary focus of the LFA is to encourage research related to the causes, treatments, prevention,
and cure of lupus. This research program is supported exclusively through donations from the LFA's
nationwide network of chapters and support groups, private foundations or corporations, and the
concerned public. It is the LFA's hope that its investment in research will produce new information
which may directly lead to much larger projects and substantially increased funding from other
sources, particularly the National Institutes of Health.
The LFA research program is constantly evolving and growing. The LFA Medical-Scientific
Advisory Council annually establishes priorities and programatic goals for lupus research. The LFA
issues a requests for proposals (RFP) through its website and distributes information to teaching
centers, hospitals, educational institutions and researchers across the country. A primary focus of the
organization is to encourage research related to the causes, treatments, prevention, and cure of
lupus.

Researchers interested in the LFA grants program can contact the LFA National Office and ask to be
placed on the RFP mailing list. Information and applications are downloadable from the LFA
Research section of this site.
                Links                               Links




LFA Center for Clinical Trials Education   http://www.niams.nih.gov/




LFA Center for Clinical Trials Education   http://www.niams.nih.gov/




LFA Center for Clinical Trials Education   http://www.niams.nih.gov/
LFA Center for Clinical Trials Education   http://www.niams.nih.gov/




LFA Center for Clinical Trials Education   http://www.niams.nih.gov/




LFA Center for Clinical Trials Education   http://www.niams.nih.gov/
Lupus Foundation of America   LFA Research




Lupus Foundation of America   LFA Research
                Links                                   Links




http://www.niams.nih.gov/hi/registry/regis LFA Web Chat: What Is New for Lupus
                try.htm                         Research and Treatment




http://www.niams.nih.gov/hi/registry/regis LFA Web Chat: What Is New for Lupus
                try.htm                         Research and Treatment




http://www.niams.nih.gov/hi/registry/regis LFA Web Chat: What Is New for Lupus
                try.htm                         Research and Treatment
http://www.niams.nih.gov/hi/registry/regis LFA Web Chat: What Is New for Lupus
                try.htm                         Research and Treatment




http://www.niams.nih.gov/hi/registry/regis LFA Web Chat: What Is New for Lupus
                try.htm                         Research and Treatment




http://www.niams.nih.gov/hi/registry/regis LFA Web Chat: What Is New for Lupus
                try.htm                         Research and Treatment
             Links




LFA Web Chat: Clinical Trials and
           Lupus




LFA Web Chat: Clinical Trials and
           Lupus




LFA Web Chat: Clinical Trials and
           Lupus
LFA Web Chat: Clinical Trials and
           Lupus




LFA Web Chat: Clinical Trials and
           Lupus




LFA Web Chat: Clinical Trials and
           Lupus
                       Questions




Is lupus included in the Americans with Disabilities Act
(ADA)?


Can people with lupus qualify for Social Security
Disability?




What do I need to do to apply?




How do I know if I am eligible for Social Security
Disability?

What if I am disabled but have not worked long enough or
recently enough to be eligible for SSDI?
I've heard that it is almost impossible to get disability. Is
this true?




I've just been denied disability benefits by Social Security.
What do I do?


How can I find an attorney who specializes in disability
law?




Is there a list of insurance companies that cover lupus?
                                     Answers

The language of the American's with Disabilities Act was written in broad terms
and therefore, most illnesses are included. Contact the Job Accommodation
Network to learn more about the ADA, how it applies to your work situation and
what is required of the employee and employer to be in compliance with the law.

The Job Accommodation Network (JAN) is a free service of the U.S. Department
of Labor, Office of Disability Employment Policy, and provides information
about job accommodations, the Americans with Disabilities Act (ADA), and the
employability of people with disabilities. You can call the JAN via toll free
numbers and speak to a counselor about your situation.
Lupus affects everyone differently. Not everyone is disabled by lupus. A
diagnosis of lupus does not automatically entitle a person to disability benefits.
The Social Security Administration recognizes systemic lupus erythematosus as a
potentially disabling illness and includes SLE in their listing of impairments.

First, ask your doctor if in his/her opinion you are disabled according to the
definition used by the Social Security Administration.

Disability definition: the inability to engage in any substantial gainful activity by
reason of any medically determinable physical or mental impairment which can
be expected to result in death or which has lasted or can be expected to last for a
continuous period of not less than 12 months.

Second, contact your nearest Social Security Administration office and request all
information (brochures/pamphlets) and forms to apply for SSDI (Social Security
Disability Insurance). They are listed in your phone book. You also can call their
toll-free number, 1-800-772-1213, between 7 a.m. and 7 p.m. any business day.
SSDI is an insurance plan supported through payroll deduction (FICA
withholding tax) that covers most workers in the U.S. Eligibility is based on prior
work. You must be under age 65 and have worked long enough and recently
enough to be eligible to apply. The Social Security Administration's web site has
a Benefit Eligibility Screening Tool (BEST) that can help you identify all the
benefits you may be eligible for.
There is another disability program, Supplemental Security Income (SSI), which
provides benefits to the needy and disabled who have not worked long enough or
recently enough to be eligible for SSDI.
Applying for and receiving Social Security Disability can be difficult and time
consuming; it can take up to a year or longer. You must prove your disability. It
requires work on your part to manage your claim and to make sure that your
application is COMPLETE. It is crucial that you provide thorough information so
the people who review your claim fully understand the impact your lupus, and
other illnesses, have on your ability to work, and your ability to perform daily
functions at home. The Social Security Administration (SSA) must justify the
disability payments they make. If the forms submitted do not prove to their
satisfaction that you are disabled, then the SSA can not justify paying benefits,
and you will be denied. On the other hand, a claim that is well documented and
supported with complete information likely will provide the justification needed
for payment of benefits. A denial is only a notice that the information you
provided does not prove you are disabled. There is an appeals process. We
encourage everyone to follow thorough with the appeal. It is an opportunity for
you to submit further information to prove you are disabled.

To assist people in completing their application for disability, the Lupus
Foundation of America has available the Disability Handbook for Social Security
Applicants. Written by attorney Douglas Smith, this recently revised and
expanded Disability Handbook shows how to prove to the Social Security
A denial is only a notice that the information you provided so far does not prove
you are disabled. There is an appeals process. We encourage everyone to follow
through with an appeal. It is an opportunity for you to submit further information
to help prove you are disabled. You must appeal within 60 days.

If your first appeal is denied, then you can pursue a second appeal where you will
have a hearing before an administrative law judge. We generally recommend that
if you progress to this level that you have an attorney familiar with disability law
represent you.
The National Organization of Social Security Claimants Representatives
(NOSSCR) has a geographic listing of lawyers that specialize in disability cases.
They can refer you to an attorney in your area. You may reach them during
Eastern business hours by calling: 1-800-431-2804 http://www.nosscr.org/
The LFA doesn't have a list of insurance companies that write policies for people
with chronic or preexisting conditions. Every state has different insurance
regulations. We urge you to contact the State Department of Insurance for
information on health or life insurance coverage in the state where you live.
Discuss with them the particulars of your situation to find out your options.
Contact information for U.S. State Departments of Insurance is available at:
http://www.naic.org/state_web_map.htm
                         Links




U.S. Department of Justice Americans with Disabilities Act




Social Security Disability Program: Disability Information




        Benefit Eligibility Screening Tool (BEST)
Disability Handbook for Social Security Applicants




             http://www.nosscr.org/




    http://www.naic.org/state_web_map.htm.
         Links                          Links




                             LFA Web Chat: SSI, SSD &
                            Medicaid Issues for People with
Job Accommodation Network               Lupus

                             LFA Web Chat: SSI, SSD &
                            Medicaid Issues for People with
                                        Lupus




                             LFA Web Chat: SSI, SSD &
                            Medicaid Issues for People with
                                        Lupus




                             LFA Web Chat: SSI, SSD &
                            Medicaid Issues for People with
                                        Lupus
                             LFA Web Chat: SSI, SSD &
                            Medicaid Issues for People with
                                        Lupus
                LFA Web Chat: SSI, SSD &
               Medicaid Issues for People with
LFA Chapters               Lupus




                LFA Web Chat: SSI, SSD &
               Medicaid Issues for People with
                           Lupus

                LFA Web Chat: SSI, SSD &
               Medicaid Issues for People with
                           Lupus




                LFA Web Chat: SSI, SSD &
               Medicaid Issues for People with
                           Lupus
           Links




LFAWeb Site: Coping with Lupus
     (Lupus on the Job)


LFAWeb Site: Coping with Lupus
     (Lupus on the Job)




LFAWeb Site: Coping with Lupus
     (Lupus on the Job)




LFAWeb Site: Coping with Lupus
     (Lupus on the Job)

LFAWeb Site: Coping with Lupus
     (Lupus on the Job)
LFAWeb Site: Coping with Lupus
     (Lupus on the Job)




LFAWeb Site: Coping with Lupus
     (Lupus on the Job)


LFAWeb Site: Coping with Lupus
     (Lupus on the Job)




LFAWeb Site: Coping with Lupus
     (Lupus on the Job)
                  Questions




Can the Lupus Foundation of America (LFA)
provide financial assistance to individuals in
need?




Can the LFA help me pay for my prescription
medications?


Does the Lupus Foundation of America have a
scholarship program to help students with
lupus pay for college/training?
                            Answers
Unfortunately, the Foundation is not set up to provide individuals
with financial assistance. We may, however, be able to refer you
to other agencies or organizations that can be of help. We
encourage you to contact your nearest LFA Chapter as they may be
able to assist you in locating local resources. You also can contact
your county Department of Social Services to find out about
available services in your area.

The U.S. Federal Government has three web portals to help
individuals identify federal programs for which they may be
eligible.
The LFA is not able to provide financial assistance to individuals
with lupus. If you are having difficulty paying for medications to
treat your lupus, there may be assistance available through a
variety of programs that you can find listed on the LFA web site:
Prescription Medications.

Most pharmaceutical companies have an assistance program.
Check with your doctor or pharmacist if you may be eligible.
The LFA does not have a scholarship or any other form of
financial aid available to students. Students are highly encouraged
to talk to your schools financial assistance office for grants and
scholarships. Financial aid information is available at the
following websites:
The LFA does have a summer fellowship program for student
researchers who work under the supervision of an established
lupus investigator. Learn more about the Gina Finzi Memorial
Student Summer Fellowship Program.
There is a small scholarship program for people with lupus
operated by another private foundation. Learn more about the Life
Scholarship Program.
The Lupus Foundation of America, Southeast Florida Chapter, is
privileged to offer an annual $5,000 scholarship -- The Michael
Jon Barlin Scholarship Fund -- to support the educational
expenses of a Southeast Florida resident diagnosed with lupus.
Learn more about the Michael Jon Barlin Scholarship Fund.
The Patient Advocate Foundation Scholarships for Survivors: The
purpose of this scholarship is to provide support to individuals,
under the age of 25, that are or have been diagnosed with cancer or
a critical or life threatening disease.
               Links                                 Links




        www.govbenefits.gov                    www.govloans.gov




      Prescription Medications




U.S. Department of Education- Student   FinAid! The SmartStudent Guide to
        Financial Assistance                      Financial Aid


Gina Finzi Memorial Student Summer
        Fellowship Program.


      Life Scholarship Program.




 Michael Jon Barlin Scholarship Fund.


  The Patient Advocate Foundation
    Scholarships for Survivors:
              Links                          Links




          www.grants.gov




FinAid: Information on Financial Aid   FastWeb: Scholarship
       for Disabled Students           and College Searches
                        Questions
I am an African American woman who is having
significant hair loss. I have scarring and itching. I was
wondering ... would I be able to relax my hair? Or what
hair treatment can I use to braid my hair or weave my
hair? I am bothered by the hair loss.




I have recently been diagnosed with lupus SLE. I have
more frequently noticed very light vaginal bleeding after
intercourse. Is this normal for lupus patients?

Can you tell me the risk a woman with lupus has with
having sex with a man with herpes simplex ... genital
and/or oral?




Is it true that flare ups are more rare after menopause?




What is the best form of birth control for someone with
lupus?




My lupus is in remission. I want to have a breast
augmentation that I have been putting off for a long time.
Will this surgery cause any problems with my lupus?
                                      Answers
The less manipulation, the better. Any treatments that could irritate the scalp may
lead to further itching and scarring. A braid or hair weave should be fine, although
minimizing pulling on the hair is best. Thus a tight braid should be avoided. Another
option is a wig and there are some elegant options available. Sometimes insurance
will cover this if the hair loss if for a medical condition.
This can be normal for anyone but could also signal a problem with the cervix,
clotting factors, or an infection. It could also be related to whatever birth control
method you are using. Postcoital bleeding is not usually associated with your SLE
unless you are on some sort of medication that would affect clotting factors (heparin,
Plaquenil, prednisone, etc.). Either way, you should see your gynecologist or family
doctor for a pelvic examination and Pap smear.
Lupus itself and the immunosuppressive medicines used to treat lupus increase the
chance of infections, including viral infections such as herpes. Evidence suggests that
lupus patients have a particular problem with herpetic viral infections. Several things
including sunlight exposure and stress can also set off a herpetic viral reactivation.
Estrogen is important in the pathogenesis of lupus; this is why lupusis more common
in women than in men--but the role of estrogen in a patient who has established lupus
is not as clear. Lupus is not cured by menopause, and most patients continue to need
lupus medicines after menopause. If hormone therapy is given after menopause, there
is a slight increase in mild to moderate lupus flares.
There can never be one "best" method for all women with lupus, just as there is not a
"best" method for other women. If the family has been completed, the husband may
choose vasectomy or the wife tubal ligation. Progesterone methods -- either oral or
Depo-Provera -- are fine. But Depo-Provera has been limited to two years, because
longer courses may lead to osteoporosis. Oral contraceptives can be given if there are
no antiphospholipid antibodies (which increase the risk of blood clots) and stable
lupus.
It is usually ok for people with lupus to have a breast augmentation procedure as long
as they are medically cleared for the procedure. You need to discuss fully with your
physician the procedure and your current health status. You should avoid having the
procedure while you are having a flare. Be aware that any surgical procedure can
cause a lupus flare, so you need appropriate ongoing monitoring from a
knowledgeable physician. Some people with lupus can have problems with wound
healing, especially if they have "vasculitis" in the skin. Similarly if you are on
prednisone or other corticosteroids, this too can impair wound healing. Additionally,
if you have used prednisone during the last 18 months, you might need to take some
"stress" steroid doses prior to the procedure. The primary physician treating your
lupus will be able to discuss these issues and any others that could be important in
your particular case such as use of other immune suppressants, active infections, low
platelet counts etc. It is strongly advised that your lupus doctor clear you for the
surgery.
Links
                     Questions




How common is it to have both Lupus and RA?
                                        Answers
Believe it or not, it is more common than you think to have more than one disease. This is
called overlapping connective tissue diseases. The connective tissue diseases are a family
of closely related disorders. They include: Rheumatoid Arthritis (RA), Systemic Lupus
Erythematosus (SLE or lupus), Polymyositis-Dermatomyositis (PM-DM), Systemic
Sclerosis (SSc or scleroderma), Sjogren's Syndrome (SS), and various forms of Vasculitis.
Although lupus most often occurs alone, many people with lupus also have symptoms
characteristic of one or more of the other connective tissue diseases. In this circumstance,
a physician may use the term "overlap" to describe the illness. There are several well-
recognized overlaps that may affect people with lupus this includes the overlap of SLE
and RA.
Links
                            Questions




What are the 5 stages of lupus and how do they progress into the
next stage?




How can I be sure my organs are not being affected? When I go
to the doctor for blood work every six months, does that blood
work let the doctor know if there is any organ problem? Or is
there a certain test that has to be done to check my kidneys?




If you have lupus renal blood work done and it shows you are in
remission -- when you do a 24 hr. urine -- can that still be higher
than usual or will the protein be lower? I know there will always
be a certain amount of protein in urine due to the lupus. What is
considered "normal," under 1,000 or lower?
                                        Answers
There are not stages of lupus per se. When people talk about early stage or late stage they
are using those terms very loosely. They may generally mean the early development of
lupus when symptoms are just beginning to show and those that the lupus has progressed
to a point where there may be organ damage or the person has become debilitated or
anywhere in between. No one can predict how a persons disease will or will not progress.
Each person with lupus is different.

Lupus nephritis (kidney involvement) has classes, not stages. The World Health
Organization has classed lupus nephritis and other kidney diseases into 5 classes. You do
not necessarily progress from an "early" class to a "late" class although you can switch
classes.
Every patient with lupus should have screening tests of kidney function, including blood
urea nitrogen (BUN) and serum creatinine. These blood tests show how well the kidneys
are functioning to eliminate wastes. The urine should be examined to look for protein
and blood cells, called urine sediment, which may be due to inflammation in the kidneys.
If these tests are normal, they are usually repeated at intervals of about 3-6 months. If
lupus is active in other systems besides the kidneys, or if there is evidence of protein or
blood cells in the urine, these tests should be repeated much more frequently -- usually
every month. A small amount of worsening can be detected before severe changes occur.
Lower doses of prednisone or other medications may reverse the abnormalities if
detected early. Test to check liver function should be done on a periodic basis also. Talk
to your doctorproteinlab studies. less than 150 mg/24 h. For "Complete Remission,"
Normal urine about excretion is
there should be less that 150 mg/day (or close to it). Serum BUN and creatinine levels
(other measures of kidney function) return to normal in complete remission. Substantial
reductions in proteinuria, that do not "normalize" (e.g. drop from greater than 3500 mg
to between 150 – 2000 mg/day) are termed "Partial Remission." Patients who have a
complete or partial remission have a better prognosis (with respect to kidney disease)
than those do not.

In some patients, partial remission indicates ongoing inflammation whereas in others,
persistent proteinuira results from scarring associated with the healing process. In the
former situation, additional immunosuppressive therapy may be indicated.

In the latter situation, additional immunosuppressive therapy is not effective; however
use of anti-hypertensive agents that also reduce proteinuria (e.g. ACEI or ARB drugs) are
effective in slowing disease progression. The goal in the latter situation is to reduce
proteinuria as much as possible or at least to less than 2000 mg/day, if possible. Renal
biopsy may be needed to distinguish between these alternatives.
              Links                               Links




LFA Web Site: How Lupus Affects the   LFA Web Chat: Kidney Involvement
      Body (Renal System)                       and Lupus




LFA Web Site: How Lupus Affects the   LFA Web Chat: Kidney Involvement
      Body (Renal System)                       and Lupus




LFA Web Site: How Lupus Affects the   LFA Web Chat: Kidney Involvement
      Body (Renal System)                       and Lupus
            Links




LLFA Web Chat: The Kidneys and
           Lupus




LLFA Web Chat: The Kidneys and
           Lupus




LLFA Web Chat: The Kidneys and
           Lupus
                     Questions




I've read a little about polycythemia -- does a lupus
            patient develop this at times?




I would like to know; what is lupus serositis?
                                   Answers
   No, it is not common. It's extremely rare. Research on the occurrence of this
   finds only two case reports of polycythemia in lupus patients. So there is no
connection between the two. Lupus is an autoimmune disorder and polycythemia
  is a condition in which there is increased blood volume and high hemoglobin
                            levels (too many red cells).

There are two kinds of polycythemia: primary (inherited) and secondary (usually
 acquired from a medical condition that causes low oxygen in the blood such as
  lung conditions, smoking, etc.) Mild polycythemia is common in people who
                                     smoke.

Serositis is the inflammation of the serous membranes (sacs) that surround
organs. Serositis is one of the symptoms of lupus listed in the criteria of the
American College of Rheumatology. This symptom is known to affect up to 45
percent of people with lupus. Examples of serositis that can be affected by lupus
are pleurisy an inflammation of the membrane that surrounds both lungs and
pericarditis an inflammation of the sac (pericardium) that surrounds the heart.
             Links                              Links




LFA Web Site: How Lupus Affects     Laf Web Chat: Heart Disease and
the Body (Cardiopulmonary System)               Lupus




LFA Web Site: How Lupus Affects     Laf Web Chat: Heart Disease and
the Body (Cardiopulmonary System)               Lupus
             Links




LFA Web Chat: Women's Heart Health




LFA Web Chat: Women's Heart Health
                      Questions




Do you know where I can find help on learning about
systemic lupus and cirrhosis of the liver? My daughter
is 28 years old, and has both. Her physicians say that
her cirrhosis was caused by lupus.
                                 Answers
There is no association between SLE and cirrhosis of the liver. Patients with
SLE often get liver blood tests that are somewhat abnormal; a liver biopsy
in some of them shows "fatty livers." There is an entity called Lupod
hepatitis, which is actually an autoimmune disease of the liver with
antinuclear antibodies. Some skin and joint probles -- but not SLE --
require a liver biopsy to diagnose. People with lupus, like any other
medical condition, can develop cirrhosis from other causes, typically viral
hepatitis.
              Links




LFA Web Site: How Lupus Affects the
   Body ( Gastrointestinal System)

				
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