Lupus : FAQ

by Women's Health Information Center

What is lupus?

Lupus, also called systemic lupus erythematosus (sis-teh-mik lew-pus er-eh-thee-muh-toh-sis) or SLE, is a disease that affects your immune system. Normally, your immune system fights infections caused by germs. Instead of protecting your body, your immune system makes the mistake of attacking your body's healthy cells. Lupus can affect almost any part of your body, including your joints, skin, kidneys, heart, lungs, blood vessels, and brain. There is no way to know what part of your body will be affected. For most people though, lupus is a mild disease affecting only a few parts of your body, and some patients don't get inner organ problems (like in the heart and lungs), but do have skin and joint problems. Normally, lupus develops slowly, with symptoms that come and go. For some, it can cause serious and even life-threatening problems. Even for patients with diseases that hurt their organs, with good care and management and a strong partnership between a patient and her health care provider, the prognosis is good.

Who has lupus?

Lupus affects up to 1.4 million people in the United States. About 9 out of 10 people who have lupus are women. Lupus is 3 times more common in black women than in white women. It is also more common in women of Hispanic/Latina, Asian, and American Indian descent. Black and Hispanic/Latina women tend to develop symptoms at an earlier age than other women. African Americans have more severe organ problems, especially with their kidneys.

What are the different types of lupus?

There are several forms of lupus:

Systemic lupus erythematosus (SLE). SLE is the most common type of lupus. SLE can affect many parts of the body including joints, skin, kidneys, lungs, heart, blood vessels, nervous system, blood, and brain. Although SLE usually develops in people between the ages of 15 and 44 years, it can occur in childhood or later in life. The signs of SLE vary and there are usually periods of both illness and wellness (also called remission or having no symptoms). Some people have just a few signs of the disease while others have more. Its symptoms can include:

• "butterfly" rash across the nose and cheeks
• skin rashes on parts of the body exposed to the sun
• sores in the mouth or nose
• painful or swollen joints
• fever
• weight loss
• hair loss
• fatigue
• chest pain when taking deep breaths
• purple or pale fingers or toes from cold or stress
• abdominal pain
• kidney inflammation
• headaches
• paranoia
• schizophrenia
• hallucinations
• depression
• trouble thinking
• memory problems
• seizures
• strokes
• blood clots

Discoid (diss-koid) lupus erythematosus (DLE). DLE just affects the skin. It does not affect other organs, like SLE. Its symptoms can include:

• a red, raised rash on the face, scalp, or other parts of the body. The rash may become thick and scaly and may last for days or years.
• sores in the mouth or nose (sometimes)

A small group of people with DLE later develop SLE. There is no way to know if someone with DLE will get SLE. A skin biopsy (removing a piece of skin to look at under a microscope) of the rash is taken to diagnose this type of lupus.

Drug-induced lupus. This type of lupus is a reaction to some prescription medicines. The symptoms of this type of lupus are similar to SLE, except you don't have problems with your kidneys or central nervous system. It can take months to years of taking the medicine before symptoms appear. After you stop taking the drug, it could take days, weeks, or months for symptoms to go away.

Neonatal lupus. While rare, some newborn babies of women with SLE or other immune system disorders get lupus. Babies with neonatal lupus may have a serious heart defect. About one-half of babies with neonatal lupus are born with a heart condition. This condition is permanent, but it can be treated with a pacemaker (a device that helps the heart set a rhythm). Other affected babies may have a skin rash or liver problems. Some babies have both heart and skin problems.

What causes lupus?

The cause of lupus is not known. It is likely that there is no single cause but a combination of genetic, environmental, and possibly hormonal factors that work together to cause the disease. Lupus is not contagious-you can't catch it from someone. No specific "lupus gene" has been found, but it does run in families.

How is SLE diagnosed?

SLE may be hard to diagnose and is often mistaken for other diseases. For this reason, lupus has often been called the "great imitator." No single test can tell if a person has lupus. There are many ways to diagnose SLE:

1. Medical history. Give your health care provider (HCP) a complete, accurate medical history. This information, along with a physical exam and special tests, helps your HCP rule out other diseases that can be confused with lupus.

2. Symptoms. Having 4 (or more) of the 11 symptoms of lupus, as defined by the American College of Rheumatology.

3. Lab tests. The Antinuclear antibody (ANA) test is a commonly used test. An antibody is a chemical the body makes to fight off infections. The test looks for the strength of your antibodies. Most people with lupus test positive for ANA. However, other health problems, like malaria (a disease from a mosquito bite), can also give you a positive test. That's why other tests may be needed.

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