What is systemic lupus erythematosus?

Systemic lupus erythematosus (also called SLE or lupus) is an autoimmune disease. This means that your body’s defense against infection (your immune system) attacks your own tissue.

When you have lupus, areas of your skin or joints get painful, red, and swollen (inflamed). Other parts of the body can also be affected, such as the muscles, kidneys, nervous system (including the brain), blood vessels, lungs, and heart.

Lupus is a chronic (long-term) disease. A chronic disease never goes away completely. There may be long periods of time when you don’t have any symptoms. When you do have symptoms, there are usually things you can do to control them.

When lupus is severe, it can be disabling or even life threatening. Early diagnosis of lupus and prompt treatment when you start to have symptoms can help prevent damage to your organs and help you lead a normal life.

What is the cause?

The exact cause of lupus is not known. You cannot catch it from someone else. In some cases it appears to run in families. Something usually triggers lupus symptoms, like a viral infection or too much sunlight, but some people start having symptoms for no known reason.

Lupus affects mostly young and middle-aged women. Some medicines can cause symptoms similar to lupus—for example, medicines used to treat high blood pressure, abnormal heart rhythms, Crohn’s disease, or rheumatoid arthritis. Usually the lupus symptoms go away when the medicine is stopped.

What are the symptoms?

Lupus does not affect everyone in the same way. Some common symptoms are:

• Painful and swollen joints
• Fever
• Sensitivity to sunlight, which means that you sunburn more easily and your other symptoms get worse when you are out in the sun
• Rash, often on the face
• Painful, pale, blue or red fingers or toes when you are cold or stressed (Raynaud’s phenomenon)
• Feeling very tired or weak
• Hair loss
• Memory loss or trouble concentrating
• High blood pressure

Some people with lupus have a type that affects only the skin, usually in areas exposed to the sun. The rash can be mild, with just redness, or severe, with crusty, round patches that leave scars or cause your hair to fall out.

There may be times when you don’t have symptoms. These times are called remissions. Times when symptoms are more severe are called flares or flare-ups.

SLE may cause damage to the heart that makes it harder for the heart to pump blood to the body effectively.

How is it diagnosed?

Lupus can be hard to diagnose. The symptoms of lupus are similar to the symptoms of other health problems. Symptoms may come and go over months or years, so it may be hard to know that the symptoms are all caused by the same illness.

Your healthcare provider will ask about your symptoms and medical history and examine you. Tests may include:

• Blood tests to check your immune system
• Urine tests for kidney problems
• Skin or kidney biopsy, which is the removal of a small sample of tissue for testing

How is it treated?

There is no cure for lupus at this time. However, there are medicines that can help ease your symptoms and limit damage to your organs. For example:

• For pain, you can take nonprescription nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin, ibuprofen, and naproxen. NSAIDs may cause stomach bleeding and other problems. These risks increase with age. Read the label and take as directed. Unless recommended by your healthcare provider, do not take an NSAID for more than 10 days for any reason.
• For inflammation, your healthcare provider may prescribe steroid pills, creams, or shots. Using a steroid for a long time can have serious side effects. Take the steroid medicine exactly as your healthcare provider prescribes. Don’t take more or less of it than prescribed by your provider and don’t take it longer than prescribed. Don’t stop taking a steroid without your provider’s approval. You may have to lower your dosage slowly before stopping it.
• Medicines used to treat malaria may be used to treat skin or joint symptoms.
• Medicines that help control your immune system may be prescribed for severe symptoms and to decrease flare-ups.
• Other medicines may be prescribed to treat other problems caused by lupus, such as kidney problems, heart problems, headaches, or seizures.

Your healthcare provider will work with you to find the best medicines to manage your symptoms. You will need follow-up tests to check the effect of the medicines and the level of inflammation in your body. Your provider will tell you how often you need to be tested.

How can I take care of myself?

• Work out a plan with your healthcare provider for managing your symptoms. Follow your healthcare provider’s plan for treatment, including how to take your medicines and when you should have follow-up visits and tests. Ask your provider:
  • How and when you will hear your test results
  • How long it will take to recover
  • If there are activities you should avoid and when you can return to your normal activities
  • How to take care of yourself at home
  • What symptoms or problems you should watch for and what to do if you have them
• Avoid things that seem to trigger your symptoms.
• Stay physically active, according to your provider’s recommendations. You may get tired easily, but usually you will not have to give up your normal activities. During remissions, try to be more active to keep your muscles strong and your joints flexible.
• Make sure you get enough rest. Don’t let yourself get too tired or exhausted. Learn ways to cope with stress, especially if stress triggers your symptoms.
• Eat a healthy diet and keep a healthy weight.
• Try to avoid outdoor activities during peak sunlight hours (usually 10 AM to 4 PM). Exposure to the sun can worsen skin rashes and other problems of lupus. When you are exposed to sunlight, wear a hat to shield your face. Wear clothing that covers your arms, legs, and chest. Always use sunscreen with an SPF (sun protection factor) of 15 or greater.
• Don’t smoke.
• If you have problems with memory or concentration, try to stay organized and write things down so you don’t forget them. Try to focus on just one task at a time. Contact your healthcare provider if these symptoms seem to be getting worse.
• Get quick treatment for new symptoms, infections, or any other illness. Avoid people with illnesses you could catch, like colds or flu, because getting sick can make your lupus flare up.
• Keep up to date with recommended shots (immunizations). Get a flu shot every year and ask your healthcare provider about any other vaccinations you may need.
• Get support. Talk with family and friends. Join a support group in your area.

For more information, you can contact:

Lupus Foundation of America
800-558-0121 (English), 800-558-0231 (Spanish)
http://www.lupus.org