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What Is It?
Systemic lupus erythematosus (SLE) is a chronic, inflammatory disorder of the immune system that affects several body systems simultaneously.
Achy, swollen joints; fever; skin rashes; fatigue—these are some of the more typical symptoms of systemic lupus erythematosus (SLE), a chronic, inflammatory disorder of the immune system that affects several body systems simultaneously. Approximately 1.5 million people in the United States have some form of lupus, according to the Lupus Foundation of America.
SLE is classified as an autoimmune disorder because the body's immune system, which normally fights harmful bacteria and viruses, also targets healthy tissue, sometimes including skin, joints, kidneys, brain, heart and lungs. The condition can result in immediately serious or life-threatening problems or in chronic low-grade symptoms, such as fatigue and muscle aches, which affect the quality of life.
In Latin, lupus means wolf, and erythematosus means redness. Physicians who first described the disease thought that one of its characteristic rashes looked like a wolf bite. The terms "SLE" and "lupus" are often used interchangeably, but there are several kinds of lupus, including:
In general, women are far more likely than men to develop autoimmune disorders, and SLE certainly fits that paradigm, occurring up to 10 times more frequently among adult women than among men. It is also more common in African-Americans, American Indians and Asians than in Caucasians. Although lupus can develop at any age, it is usually diagnosed in women during their childbearing years. Cutaneous lupus occurs more frequently in women, but the ratio of women to men is somewhat lower than with SLE.
If you have a parent, child or sibling with lupus, your risk of developing the disease is somewhat higher, although your health care professional probably won't test you for the disease unless you develop symptoms. There is no known cure for SLE, but there are treatments designed to minimize symptoms and effects.
Lupus seems to result from a combination of genes and environment. Scientists think that people may inherit a predisposition to developing lupus but not lupus itself. People who inherit the predisposition to the disease may develop lupus after they come in contact with something that triggers it, such as a virus or medication.
The number and type of lupus symptoms vary widely among patients. Symptoms also tend to wax and wane, with patterns of inactive disease bracketed by lupus "flares."
Diagnosing systemic lupus erythematosus (SLE) is not easy. Sometimes the disease announces itself decisively with a flare resembling an infection, but more often the early stages of the disease produce only vague symptoms such as aches, rashes or fatigue, which gradually worsen over time. Lupus symptoms can be easily confused with those of other diseases.
Symptoms of lupus depend on which body systems are affected. The most common symptoms include:
Less common symptoms include:
Consult a health care professional as soon as possible if you have any of the symptoms listed above, whether singly or in combination. Multiple systemic symptoms indicate a stronger likelihood that lupus is the culprit, and a rheumatologist should evaluate you.
An evaluation for lupus consists of a thorough medical history, a physical examination and laboratory tests.
An initial diagnostic and disease activity screen usually includes a complete blood count, liver and kidney tests, blood tests for autoantibodies (increased antibodies that target healthy tissues and are an indicator of autoimmune disease), skin biopsy, urinalysis (to detect possible kidney disease), blood chemistry work-up and erythrocyte sedimentation rate (a measure of inflammation).
The antinuclear antibody (ANA) test detects autoantibodies that react against components of the nucleus, or "command center," of your own cells. A positive test indicates a stimulated immune system, which is common in people with lupus. However, ANA is also positive in people with other conditions, such as systemic sclerosis, dermatomyositis, undifferentiated and mixed connective tissue disease and rheumatoid arthritis. In addition, people without such disorders could have a positive ANA test. A positive ANA may also be found in people over 50.
Other autoantibody tests include anti-dsDNA, anti-Sm, anti-RNP, anti-Ro (SSA) and anti-La (SSB). Anticardiolipin or other antiphospholipid tests may indicate risk for a blood clotting disorder. In some cases, specialized diagnostic tests for the eyes, heart, lungs or brain, or a biopsy of the kidney may be performed.
Clearly, diagnosing lupus is a complex matter. If there is a reasonable likelihood that you have systemic lupus, you will need a referral to a rheumatologist.
If diagnosed at an early stage, treated promptly and monitored routinely, systemic lupus erythematosus (SLE) is rarely fatal. You should make sure that every health care professional you deal with knows you have lupus.
Whether your disease is mild or severe, you have to stay under close medical supervision. You should let your health care professionals know immediately if you suffer any injuries, get sick or plan to become pregnant because many things may cause your disease to flare.
Typical warning signs of a flare are:
Keep an open dialogue with a health care professional whom you trust and can easily reach in an emergency. If you are experiencing a flare, it might be important to receive diagnostic tests, change medications or postpone certain elective procedures or surgeries.
Although a lupus pregnancy is considered high risk, many women with lupus can carry their babies safely to the end of the term if they plan the pregnancy with the help of a rheumatologist and receive care from an experienced high-risk obstetrical team. Women with lupus have a higher rate of miscarriage and premature births compared to women without the disease. There are medications for lupus that are safe in pregnancy and important in controlling disease activity during pregnancy.
About 7 percent to 33 percent of women whose lupus has been in remission for at least six months prior to conception will have a lupus flare during pregnancy. In women with active lupus at conception, about 60 percent will experience a flare. Less than 20 percent experience miscarriage or death of a baby. About 20 percent of pregnant women with lupus will develop preeclampsia, a form of dangerously high blood pressure that increases the risk of miscarriage, low birth-weight babies, premature births and injury to the mother. Women with lupus also have increased risk of having preterm delivery or a baby with a low birth weight. Lupus outcomes are much better when lupus is under control before getting pregnancy.
Several over-the-counter and prescription medications are available to manage lupus symptoms including:
While there is no way to prevent systemic lupus erythematosus (SLE), there are things you can do to reduce the risk and severity of lupus flares. There are also ways to reduce the potential side effects of medications used to treat the disease.
The first step is exercise. Getting low-impact, aerobic exercise regularly can reduce joint stiffness, lower stress levels and help prevent osteoporosis, weight gain and heart problems that may be caused by medications.
It is also important to determine which environmental factors may trigger your lupus flares. Triggers may include:
Ongoing Research
There are many potential lupus treatments currently being studied in clinical trials that may become mainstream therapies in the future. Examples include drugs that target immunostimulatory cytokines, signaling pathways, receptors on cells that activate the immune system and cells that make autoantibodies, among many other targets. In addition, there are studies looking at stem cell transplants and at new medications for cutaneous lupus.
Review the following Questions to Ask about lupus so you're prepared to discuss this important health issue with your health care professional.
The immune system of a person with lupus is unbalanced, and this leads to excess targeting of normal tissue, causing inflammation, fever, achy joints, rashes and other problems. Virtually all systemic lupus patients have autoantibodies in their blood at concentrations that can be detected by lab tests.
No. The disease is treatable and flares are controllable, but no one has discovered means of limiting your chances of developing the disease.
The more common symptoms of lupus include joint pain, arthritis, unexplained fever, extended or severe fatigue, skin rashes, anemia and kidney damage. Other symptoms include neuropsychiatric problems, such as seizures, blood clotting problems, light sensitivity, hair loss, Raynaud's syndrome (fingers turning white or blue in the cold) and mouth or nose ulcers.
Lupus is not curable, but it is treatable. Your health care professional can prescribe medications to alleviate symptoms, such as pain and inflammation. You can take action as well, by eating right, exercising, avoiding sunlight and getting plenty of rest.
About seven to 33 percent of women whose lupus has been in remission for at least months prior to conception will have a lupus flare during pregnancy. In women with active lupus at conception, about 60 percent will experience a flare. Less than 20 percent experience miscarriage or death of a baby. About 20 percent of pregnant women with lupus will develop preeclampsia, a form of dangerously high blood pressure that increases the risk of miscarriage, low birth-weight babies, premature births and injury to the mother. Women with lupus also have increased risk of having preterm delivery or a baby with a low birth weight. The risk for these outcomes increases if you have antiphospholipid antibodies. The good news is that appropriate treatments and specialized care from a high-risk OB team can markedly increase the odds for a successful and safe pregnancy. One to 2 percent of babies born to mothers with certain autoantibodies (SSA-Ro and/or SSB-La) are born with neonatal lupus, and some aspects of the condition resolve within three to six months. If you have these antibodies, you may need a fetal echocardiogram during your pregnancy. In most cases, this will lead to reassurance that the baby is fine.
Drugs prescribed for lupus include nonsteroidal anti-inflammatory agents, such as aspirin or ibuprofen; acetaminophen; belimumab (Benlysta), a new monoclonal antibody; antimalarials such as hydroxychloroquine (Plaquenil) and chloroquine (Aralen); corticosteroids such as prednisone or methylprednisolone; immune suppressants such as azathioprine (Imuran, Asasan); methotrexate (Rheumatrex, Trexall); mycophenolate mofetil (CellCept); cytotoxic drugs such as cyclophosphamide (Cytoxan) and anticoagulants such as heparin (Calciparine, Liquaemin), warfarin (Coumadin) and rivaroaban (Xarelta). Topical medications such as steroids and nonsteroidal T cell inhibitors (tacrilimus, pimecrilimus) can be helpful for skin lesions.
A lupus flare can occur for no discernible reason, although some patients believe that they have experienced triggers for the flares, such as sunlight, stress, overwork, infection, injuries, surgery and immunizations.
Generalized hair loss can be due to systemic lupus or the treatments. It is usually temporary and grows back. A severe flare may cause hair to be brittle and break off, but hair should grow normally after the flare subsides. If your hair loss occurs in patches on the scalp, find out whether advanced scarring is present: if so, hair is unlikely to grow back, but if not, it may regrow. Check with your health care professional to understand which situation is most likely to apply to you.
If it is likely to be permanent hair loss, look for "alopecia" support sites. You'll find many people dealing with hair loss due to lupus or other diseases. Consider your options: They include changing your haircut; wearing wigs, hats, scarves, turbans or hair weaves; trying hair growth products or hair replacement; or not bothering to conceal it at all. If you choose a wig, look for good quality and a color that suits your skin tone. A different hairstyle can conceal patches of hair loss, and a shorter cut can make thinning hair look fuller. Choose a style that flatters your facial shape, whether it's the same as always or rounder due to corticosteroid treatment.
For information and support on coping with Lupus, please see the recommended organizations and books listed below.
American College of Rheumatology
Website:
https://www.rheumatology.org
Address: 1800 Century Place, Suite 250
Atlanta, GA 30345
Phone: 404-633-3777
Lupus Alliance of America
Website:
https://www.facebook.com/Lupus-Alliance-of-America-Inc-107553585677/
Address: 3871 Harlem Rd.
Buffalo, NY 14215
Phone: 315-454-9886
Email: info@lupusalliance.org
Lupus Foundation of America
Website:
https://www.lupus.org
Address: 2000 L Street, NW, Suite 710
Washington, DC 20036
Hotline: 1-800-558-0121
Phone: 202-349-1155
Email: info@lupus.org
Books
ABC of Asthma, Allergies and Lupus: Eradicate Asthma - Now!
by F. Batmanghelidj
Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting On with Your Life
by Rita Baron-Faust and Jill Buyon
Challenges of Lupus - Insights & Hope
by Henrietta Aladjem
Health Journeys For People With Rheumatoid Arthritis Or Lupus
by Belleruth Naparstek