Lupus Erythematosus

GENERAL INFORMATION:

What is lupus?

• Lupus (LOO-pus) is also called systemic (sis-TEM-ik) lupus erythematosus (er-i-thee-mah-TOH-sus), or SLE. Lupus may cause problems with your skin, joints, blood, brain, heart, lungs, and kidneys. Lupus is a lifelong disease that can be mild, serious, or even life-threatening. There is no cure for lupus, but its symptoms and long-term damage can be decreased with treatment.
  
  
• Lupus is a disease that may have active and quiet (remission) periods. The active periods, sometimes called "flares" or "relapses," are when you have symptoms of lupus. A remission period is when you have few or no symptoms of the disease. A remission may last months or years, or you may not have remission periods at all.

What causes lupus?

• Lupus is an autoimmune (aw-toh-i-MUN) disease. It happens when your immune (i-MUN) system does not work as it should. Your immune system protects your body by attacking harmful things like germs. With lupus, your immune system gets confused and starts attacking your own body.
  
  
• It is not known what causes your immune system to attack your own body and cause lupus. Scientists think that more than one thing may cause it. You may be more likely to have lupus if someone else in your family had a similar disease. Lupus may be triggered (started) by infections (such as a cold), stress, an injury, or sunlight. Different things may trigger lupus in different people. You cannot "catch" lupus from someone with lupus.
  
  
• Female hormones may play a role in causing lupus, which may be why it is more common in women. Hormones are special chemicals that your body makes to control how different parts of your body work. Lupus symptoms may show up or get worse during or after a pregnancy.
  
  
• Certain medicines may cause lupus. This is called drug-induced lupus. Unlike chronic (lifelong) lupus, drug-induced lupus usually goes away when the medicine is stopped. In patients with chronic lupus, certain drugs may cause a flare of lupus symptoms.

Signs, symptoms, and problems you may have due to lupus: Lupus symptoms often look or feel like signs and symptoms of other medical conditions. It can be very hard for your caregiver to diagnose your lupus. It may take months to years for your caregiver to know for sure that you have lupus. Lupus is different for everyone who has it. Signs and symptoms often depend on what body systems are affected by your lupus.

• Painful joints that may be swollen, red, or warm. Joints are the places in your body where two bones meet.
  
  
• Swelling of the face or legs. You may also have swollen lymph (limf) nodes in the neck, arm, or groin.
  
  
• Fever over 100°F (38°C).
  
  
• Long-lasting or extreme tiredness (fatigue).
  
  
• Skin rashes (sometimes butterfly-shaped on your cheeks and nose).
  
  
• Chest pain when taking a deep breath.
  
  
• Hair loss.
  
  
• Sunlight may bother you, cause a rash, or make other lupus symptoms worse.
  
  
• Mouth or nose sores.
  
  
• If the digestive tract is affected, you may have nausea (upset stomach), vomiting (throwing up), or diarrhea (loose BMs). You may have pain in your abdomen (belly). You may also lose weight.

• Kidney problems.
  
  
• Hardening of the arteries, which increases your chance of having heart problems. You may also have high blood pressure.
  
  
• Fingers turning white or blue when exposed to cold. This is called Raynaud's (ray-NOZ) syndrome (SIN-drom). Cigarette smoke, caffeine, stress, and other things can also trigger Raynaud's symptoms.
  
  
• Forgetfulness, trouble concentrating (paying attention to a task), dizziness, or confusion. You may also have trouble expressing your thoughts.
  
  
• Headaches, vision problems, or seizures (convulsions).
  
  
• Anemia (low iron level in your blood). You may have other blood problems such as bleeding problems, blood clots, or stroke (blood clot to your brain).
  
  
• Emotional problems, such as depression or anxiety.

Tests and treatment:

• There is no test that can say for sure that you have lupus. Certain test results can help caregivers know the best way to treat you. Tests can also help your caregiver find other problems. Treating lupus involves controlling its symptoms and preventing long-term damage to your body.
  
  
• You may need tests on your blood and urine. X-rays and scans may be needed of your joints or other parts of your body. Tissue may be taken from your skin, a muscle, or a kidney for tests. This is called a biopsy (BEYE-op-see).
  
  
• Some of the medicine used to treat lupus may decrease your symptoms but cause other problems. Ask your caregivers about side effects to watch for when taking your lupus medications.
  
  
• Other treatments may include learning ways to exercise and control stress. Rest, avoiding infection, and early treatment of flare-ups are very important for people who have lupus. It is also important to protect yourself from the sun, eat healthy, and control other illnesses you may have.

Risks: There is no cure for lupus. Most people with lupus live long, productive lives. However, lupus makes some people so tired that they cannot work at times. Your chance of having a seriou s infection is increased because of lupus. Lupus can cause problems such as vision loss, heart disease, kidney failure, and stroke. Lupus can be life-threatening. Call your caregiver if you are worried or have questions about your medicine or care.

Support:

• Lupus is a life-changing disease for you and your family. Emotional problems are common with people who have lupus. These problems may be caused by the disease, or by the stress of having lupus. Some medicines used to treat lupus may also cause emotional problems. Depression, anxiety, and other mood problems are common, but can be helped with treatment. Talk to your caregivers, family, or friends about your feelings. Let them help you. Encourage those close to you to talk to your caregiver about how things are at home. Your caregiver can help your family better understand how to support a person with lupus.
  
  
• You may also want to join a support group. This is a group of people who also have lupus. Ask your caregiver for the names and numbers of support groups in your town. You can contact one of the following national organizations for more information.
  • Lupus Foundation of America, Inc.
    2000 L Street N.W., Suite 710
    Washington, DC 20036
    Phone: 1-202-349-1155
    Phone: 1-800-558-0121
    Web Address: http://www.lupus.org
    
  • National Institute of Arthritis and Musculoskeletal and Skin Disease
    Information Clearinghouse
    National Institutes of Health
    1 AMS Circle
    Bethesda, MD 20892-3675
    Phone: 1-301-495-4484
    Phone: 1-877-226-4267
    Web Address: http://www.niams.nih.gov
    

When to call a caregiver:

• Let your caregiver know if you start having symptoms of a lupus flare-up. Also call your caregiver at the first signs of an illness or infection. Tell your caregiver about any new bleeding problems, such as nosebleeds or blood in your urine or BM. Women with lupus should talk to a caregiver before becoming pregnant.
  
  
• See a caregiver right away if you have bleeding that cannot be controlled, bad abdominal pain, or trouble breathing. Fainting, confusion, unexplained chest pain, or having a seizure are also reasons to see a caregiver right away.

CARE AGREEMENT:

You have the right to help plan your care. To help with this plan, you must learn about your health condition and how it may be treated. You can then discuss treatment options with your caregivers. Work with them to decide what care may be used to treat you. You always have the right to refuse treatment.

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