Though the Lupus Foundations of America estimates that 1.5 million Americans have lupus, the Centers for Disease Control and Prevention offer a more conservative estimate of 237,000. Systemic Lupus Erythematosus, usually referred to as SLE or lupus, is sometimes labeled the “great imitator.” Why? Because of its wide variety of symptoms, it can often be confused with other disorders. Lupus, which affects the joints, kidneys, and skin, can be fatal. However, there is much reason for hope. Improvements in therapy have significantly increased these patients’ quality of life and their life expectancy.
25,000 children and adolescents in the U.S. have lupus or a related disorder. It is more common than leukemia, cystic fibrosis or muscular dystrophy, and yet, many people have never heard of it occurring in children.
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Lupus or SLE is an autoimmune disease that can affect the skin, joints, kidneys, lungs, nervous system, and other organs of the body. Usually, patients have skin rashes and arthritis, as well as fatigue and fever. Lupus attacks can vary from mild to severe, and usually alternate between periods of activity and periods when the disease is mostly quiet.
The immune system normally protects the body by producing antibodies that attack foreign germs and cancers. With lupus, the immune system misfires. Instead of producing protective antibodies, the auto-immune disorder begins manufacturing “auto-antibodies” which attack the patient’s own tissues. (Doctors refer to this as a “loss of self-tolerance.”)
As the attack continues, other immune system cells join the fight. This leads to inflammation and blood vessel abnormalities (vasculitis). These antibodies then end up in the immune system of cells in organs where they cause tissue damage.
Why this inflammatory reaction begins is not known. It is probably the result of a combination of inherited tendencies and environmental factors (such as viruses, the ultraviolet rays in sunlight, Silica dust, and allergies to medications). People affected by lupus may also have an impaired process for clearing old and damaged cells from the body, which then causes an abnormal reaction in the immune system.
Lupus is difficult diagnosis. Suspected cases must be confirmed by a series of blood tests and symptoms. The most significant test measures ANA, the antinuclear antibody which is present in virtually all lupus patients. Additional, more specific tests, such as the anti-double strand DNA (dsDNA) and anti-smith antibodies (Sm), confirm the diagnosis of lupus. Levels of certain complement proteins (a part of the immune system) in the blood are also measured to help diagnose and track the disease.
The presence of other types of antibodies (anti-phospholipid antibodies) can help doctors diagnosis lupus. These antibodies signal an increased risk of specific complications such as miscarriage and/or blood clots that may lead to stroke or lung injury.
Physicians frequently use the 1997 update of the 1982 Revised Criteria for Classification of Systemic Lupus Erythematosus to aid them in considering whether a patient with symptoms may have lupus. Although this table was originally designed for clinical research studies it can be helpful when considering an individual patient as well. Please note that most of the findings listed in the table must be documented by a physician. There are many findings in lupus that are not listed in this table. Therefore, a rheumatologist will use this table only as a starting point.
Patients with lupus typically experience:
Patients may also have chest pain when breathing deeply, heartburn, abdominal pain, and poor circulation to the fingers and toes.
All of these symptoms can develop gradually, making lupus hard to diagnose. Rheumatologists specialize in the diagnosis and treatment of autoimmune disorders such as lupus, and will therefore be able to provide patients with the best advice about treatment options.
Lupus is a disease that can lead to inflammation in multiple organs including the kidneys, the lining tissue of the heart and lungs (pleuritis and pericarditis), and the brain as well as the joints and skin.
There is no cure for lupus and its management can be a challenge. However, in the past several years, treatment has improved considerably and we currently have very medications that are proving effective. Treatment decisions are based on symptoms and the severity of those symptoms.
Patients with muscle or joint pain, fatigue, skin abnormalities (such as rashes), and other responses that are not life-threatening can be treated conservatively. These options include nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Motrin, Advil) and naproxen (Naprosyn) and anti-malarial medications such as hydroxychloroquine (Plaquenil). Remember, some of these NSAIDS can cause serious side effects like stomach bleeding or kidney damage. If you have lupus, always check with your doctor before taking any of the over the counter medications.
Those with serious and life-threatening problems such as kidney inflammation, lung or heart involvement, and central nervous system symptoms need more aggressive therapy. This may include high dose corticosteroids such as prednisone (Deltasone) and other drugs that suppress the immune system such as azathioprine (Imuran), cyclophosphamide (Cytoxan), and cyclosporine (Neoral, Sandimmune). Recently mycophenolate (CellCept) has been used to treat severe lupus kidney disease. Health care providers may combine several medications to control the disease and prevent tissue damage.
Treatment depends upon an individual assessment of risks and benefits. Most immunosuppressive medications, for instance, may cause significant side effects such as increased risk of infections, nausea, vomiting, hair loss, diarrhea, high blood pressure, and osteoporosis. Rheumatologists may also reduce or discontinue a medication after the disease goes into remission for a period of time. As a result, it is important to undergo careful and frequent medical evaluation to monitor symptoms and adjust treatment as necessary.
While the treatment for lupus has improved and long-term survival has increased, it is still a chronic disease that can limit activities. Severe sickness usually results from the most serious forms of the disease. More often, quality of life is challenged by symptoms like fatigue and joint pains, which are not life threatening. Further, the unpredictability of lupus and the occasional lack of response to treatment can lead to depression, a loss of hope or the will to keep fighting, or other emotional distress such as irritability or anger.
The best way to control lupus is to:
Young women with lupus who wish to have a baby should carefully plan their pregnancies. With physician guidance, pregnancies should be timed for a period when lupus activity is low. Pregnancies must be carefully monitored and certain medications avoided (such as cyclophosphamide, cyclosporine, and mycophenolate) that would harm the baby. Women whose disease is very active, or who are taking some of these harmful medications, should use birth control.
The possibility that the use of estrogen may cause or worsen lupus has always been a concern for rheumatologists. Recent research has shown that estrogen can trigger some mild or moderate flares of lupus, but does not cause very severe worsening of symptoms. However, because estrogen can increase the risk of blood clots, it should be avoided in patients with lupus whose blood tests have revealed the presence of antiphospholipid antibodies.
Most people with lupus can live normal lives, but this disorder must be carefully monitored and treatment adjusted as necessary to prevent serious complications.The best way to control lupus is to be very careful to take all your medications as prescribed, visit your physician regularly, and learn as much as you can about lupus, your medications, and your progress. Get involved in your care. Don't take a back seat.
Lupus is a complex disease. As specialists in the diagnosis and treatment of autoimmune disorders such as lupus, rheumatologists are able to provide patients with the best advice about treatment options.
It is recommended that if you have four or more of the eleven criteria, you should consult with a rheumatologist who specializes in Lupus.For more information
The American College of Rheumatology has compiled this list to give you a starting point for your own additional research. The ACR does not endorse or maintain these Web sites, and is not responsible for any information or claims provided on them. It is always best to talk with your rheumatologist for more information and before making any decisions about your care.
The Arthritis Foundation
The Lupus Foundation of America
Lupus Research Institute
National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
Written by Ellen Ginzler, MD, and Jean Tayar, MD, and reviewed by the American College of Rheumatology Patient Education Task Force.
This patient fact sheet is provided for general education only. Individuals should consult a qualified health care provider for professional medical advice, diagnoses and treatment of a medical or health condition.
© 2010 American College of Rheumatology