What is lupus?
Systemic lupus erythematosus (SLE) is a chronic, autoimmune disease that can attack any part of the body. The immune system is responsible for identifying entry of "foreign" material in our body, such as germs, and fighting it by making antibodies. In people with autoimmune diseases, the immune system is not able to clearly tell the difference between these "foreign" invaders and the body's own healthy cells, and starts a fight toward these healthy cells by forming antibodies against them. These are called autoantibodies. Since cells are found in all the organs in the body, lupus can potentially affect any part of the body. This fight put up by our immune system against our own cells creates inflammation. Signs and symptoms of inflammation include pain, swelling, heat and redness.
Who does SLE affect?
SLE mostly affects women of childbearing age (15-44). However, younger and older patients, as well as men, may also develop SLE. Women of color are two to three times more likely to develop lupus, but people of all races and ethnic groups can develop lupus.
What causes SLE?
Multiple factors may lead to development of SLE. No genes are known to cause SLE, but it may run in certain families with autoimmune diseases. People of African, Asian, Hispanic/Latino, Native American, Native Hawaiian or Pacific Island descent have a greater risk of developing SLE, perhaps a genetic predisposition. Some environmental triggers that set off the illness or bring on a flare are ultraviolet rays from the sun, stress, illness and certain medications. The fact that the disease mostly affects young women also implies some role of hormones (estrogens).
Is cutaneous lupus the same as SLE?
No. When lupus affects only the skin and nothing else, it is referred to as cutaneous lupus. However, in SLE, various autoantibodies to various parts of a cell are found circulating in the blood, and there is evidence of some organ involvement from these autoantibodies.
What is the general course of SLE?
SLE is marked with periods of flareups (worsening of symptoms) and remissions (improvement in symptoms). Even when the disease seems to be in remission due to lack of perceptible symptoms, it may be active in another organ, such as blood or kidney. Therefore, it is important to continue to see your rheumatologist periodically all along, so that organ involvement can be detected early and treated, in order to prevent or limit irreversible damage to the organs.
Why is SLE difficult to diagnose? Why is there a time lag between onset of symptoms and SLE diagnosis?
SLE symptoms vary from patient to patient, and can be very nonspecific and easily missed. SLE is also not as commonly seen by primary care physicians, and may be missed.
What are some of the symptoms of SLE?
The most common symptoms of lupus are tiredness, joint pains, rash on the face, chest pain, sensitivity to sunlight, anemia and sores of the mouth and/or nose.
How is the diagnosis made?
Diagnosing SLE involves a careful review of your current and past symptoms, medical history, family history and a thorough physical examination. Laboratory and other tests may be ordered to exclude common diseases that may give similar symptoms, and to support the diagnosis of SLE.
What is ANA?
Antinuclear antibodies (ANA) are antibodies against the nucleus, the central part of the cell. The ANA blood test measures the presence of these ANA antibodies in the blood and is a sensitive, but not specific, test for SLE. (Sensitivity of a test means that the test is positive if the disease is present; specificity of a test means that the test is negative if the disease is absent.) ANA is found in 97 percent of people with SLE (meaning, it has a high sensitivity). A positive ANA test result does not always mean SLE. The ANA can be positive in people with other illnesses, or positive in people with no illness (meaning, it has a low specificity).
What do I need to bring to see a specialist for SLE?
To get the most from your specialist visit, please take a moment at home to:
- think about what and when the symptoms started
- what tests were done
- the results of those tests if you have them available
- any pertinent medical records (arrange transfer of your medical records to the doctor's office beforehand)
- names and doses of medications
- a list of any allergies
- a list of your doctors
- what you are hoping from the visit
- jot down the questions that pop into your mind from time to time, and prioritize them
How is SLE treated?
Education of the patient and their significant other, or support system, is the key to treatment. Since each person's SLE symptoms are different, treatments are also varied. The basic principle is the use of medications that suppress the immune system, so that the resultant attack and inflammation on organs is limited. Managing SLE requires a functional patient and medical personnel working as a team.
Is SLE curable?
No. For most people with SLE, aggressive screening and follow-up allows early detection of flareups and active inflammation. Early and appropriate treatment can minimize symptoms, reduce inflammation and pain and limit irreversible organ damage.
What preventive steps may I take for my health if I have SLE?
- Healthy diet
- Routine preventive care (such as getting a Pap smear and mammogram, if applicable)
- Assessment and treatment of risk factors for heart disease
(such as smoking and high cholesterol)
- Obtaining DEXA scans for diagnosis and treatment of osteoporosis which can be caused by medications used to treat SLE (such as prednisone)
- Adequate intake of calcium and vitamin D
- Keeping up with routine vaccinations (such as flu and pneumonia vaccines)
Will taking any vitamins, herbals or supplements help?
Eating a healthy diet is recommended. There is no known, direct role of vitamins in treating SLE. However, folic acid (vitamin B9) is prescribed to reduce toxicity in patients being treated with methotrexate. Use of herbals and supplements in SLE has not been systematically studied. Some herbal supplements can make a person's lupus symptoms worse (such as echinacea, astragalus and alfalfa sprouts).
Can SLE patients have babies?
Yes, in most cases. However, it requires careful planning and in some cases ongoing consultation with a rheumatologist and a high-risk obstetrics doctor. Careful screening and attention to any increased risk to the mother and the developing fetus is needed before planning a pregnancy can be considered.
What kind of birth control options may be used safely in SLE for preventing pregnancy?
Spermicides and barriers can be used by any SLE patient. Hormonal methods may be used if SLE is not active, and there is no previous history of blood clots, antiphospholipid syndrome or other risk factors for blood clots.
What is the prognosis in SLE?
With careful follow-up and treatment, 80 to 90 percent of people with SLE can expect to live a normal life span.
What other resources are there for SLE patients?
Please visit our Rush Lupus Clinic Resources page to browse through some educational and support resources available for SLE patients.
The Lupus Foundation of America website has information about various aspects of SLE, including comprehensive overviews of symptoms, diagnosis and treatment:
American College of Rheumatology is another excellent source of information about lupus: