What is lupus (systemic lupus erythematosus)?
Lupus is an autoimmune disease. This means that the body's natural defense system (immune system) attacks your body's healthy tissues instead of attacking only things like bacteria and viruses. This causes inflammation.
Some people with lupus have only mild symptoms. But the disease is lifelong and can become severe. Lupus may cause problems with your skin, kidneys, heart, lungs, nerves, or blood cells.
Systemic lupus erythematosus is the most common and most serious type of lupus. But there are other types of lupus. They include discoid or cutaneous lupus, drug-induced systemic lupus, and neonatal lupus.
What are the symptoms of lupus?
Lupus symptoms vary widely, and they come and go. The times when symptoms get worse are called relapses, or flares. The times when symptoms are under control are called remissions.
Common symptoms include:
- Fatigue. Increased fatigue is a classic sign that a symptom flare is about to happen.
- Joint pain or swelling (arthritis).
- A fever.
- A skin rash. Many people have a butterfly rash over the cheeks and bridge of the nose. Skin sores or flaky red spots may appear on the arms, hands, face, neck, or back.
- Exposure to ultraviolet light (such as sunlight or tanning parlors) typically makes the skin rash worse and can trigger lupus flares.
- Mouth sores.
- Hair loss.
- Raynaud's syndrome. This causes fingers and toes to turn white and blue or red. The skin feels numb, tingly, and cold.
Over time, some people with lupus have problems with the heart, lungs, kidneys, skin, blood cells, or nervous system.
How is lupus diagnosed?
There is no single test for lupus. Because lupus affects different people in different ways, it can be hard to diagnose. It can take time for symptoms to develop. And sometimes it takes weeks to years to diagnose.
Your doctor will give you an exam and ask questions about your symptoms and past health. He or she will check for certain criteria to help diagnose lupus. These include a butterfly rash, joint swelling, fatigue, being sensitive to sunlight, and mouth or nose sores.
If you have lupus symptoms and you have a positive antinuclear antibody test result, you may not need more testing.
If your doctor feels that you do need more tests, you may have one or more of these tests:
- Other antibody blood tests
- Complement test
- Erythrocyte sedimentation rate or C-reactive protein
- Complete blood count
- Urinalysis
- Lupus anticoagulant test
How is lupus treated?
Lupus treatment can be complicated. Symptoms vary, and flares and remissions can still happen. But the goal of treatment is to find a balance between controlling your symptoms, preventing organ damage, and having fewer side effects.
Treatment for mild lupus may include:
- Antimalarial medicines. They can treat fatigue, joint and muscle pain, and skin rashes.
- Corticosteroid cream for rashes.
- Nonsteroidal anti-inflammatory drugs (NSAIDs). These can treat mild joint or muscle pain and fever.
- Corticosteroid pills. They're used if other medicines don't control your symptoms.
If your lupus causes or threatens organ damage, is life-threatening, or has a serious impact on your quality of life, you may also need to take:
- Corticosteroids in higher doses. These may be in pills or through a vein in your arm (I.V.).
- Medicine that suppresses your immune system (immunosuppressants).
Some people get serious kidney disease that can't be controlled with medicine. They may need dialysis or a kidney transplant.
How can you care for yourself when you have lupus?
One of the goals of controlling mild to moderate lupus symptoms is to prevent flares. You can:
- Get plenty of rest. Some people with lupus need up to 12 hours of sleep every night.
- Avoid the sun. Wear sunscreen and protective clothing when you are outside.
- Exercise regularly to prevent fatigue and joint stiffness.
- Pace yourself. Don't do too many activities.
- Stop smoking.
- Watch your symptoms. If they seem to be getting worse, take steps to control them. For example, if your fatigue, pain, or rash gets worse, it may be a sign of a flare.
- Talk with your doctor about any vaccines you may need.
With good self-care, most people who have lupus can keep doing their regular daily activities.
Help your family and friends understand your limits and needs when your symptoms flare. Build a support system of family, friends, and health professionals.
Lupus: When to call
Call 911 anytime you think you may need emergency care. For example, call if:
- You have symptoms of a heart attack. These may include:
- Chest pain or pressure, or a strange feeling in the chest.
- Sweating.
- Shortness of breath.
- Nausea or vomiting.
- Pain, pressure, or a strange feeling in the back, neck, jaw, or upper belly or in one or both shoulders or arms.
- Lightheadedness or sudden weakness.
- A fast or irregular heartbeat.
After you call 911, the operator may tell you to chew 1 adult-strength or 2 to 4 low-dose aspirin. Wait for an ambulance. Do not try to drive yourself.
Call your doctor now or seek immediate medical care if:
- You are short of breath.
- You have blood in your urine or are urinating less often and in smaller amounts than usual.
- You have a fever.
- You feel depressed or notice any changes in your behavior or thinking.
- You are dizzy or have muscle weakness.
- You have swelling of the lower legs or feet.
Watch closely for changes in your health, and be sure to contact your doctor if:
- Your symptoms get worse or you develop any new symptoms. These may include aching or swollen joints, increased fatigue, loss of appetite, hair loss, skin rashes, or new sores in your mouth or nose.
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