What is lupus?

Lupus (systemic lupus erythematosus) is a long-term disease that can cause inflammation, pain, and tissue damage in your body. It is an autoimmune disease. This means the immune system attacks its own tissues. Lupus may cause problems with your skin, kidneys, heart, lungs, nerves, or blood cells. There are other types of lupus, but systemic lupus erythematosus is the most common and most serious type.

When you have lupus symptoms, you are having flares or relapses. When your symptoms get better, you are in remission. Lupus may get worse very quickly. There is no way to tell when a flare will happen or how bad it will be. When you have a lupus flare, you may have new symptoms as well as symptoms you have had in the past.

Learn your body's signs of a flare, such as joint pain, a rash, a fever, or being more tired. When you see any of these signs, take steps to control your symptoms.

The course of lupus varies by individual. It's hard to predict because symptoms come and go. You may not notice the symptoms for a long time. But sometimes lupus develops rapidly.

The times when you have symptoms are called flares or relapses. Remissions are times when your symptoms are under control. Flares and remissions can occur abruptly and without clear cause. There is no way to predict how bad a flare will be or how long it will last. During a flare, you may have new symptoms plus those you have had in the past.

Children can get lupus. But it usually develops in the teen years or later. When vital organs are involved, lupus in children appears to be more severe than in adults.

There are also concerns if you have lupus and are pregnant. Some people with lupus have kidney and heart problems. But most people live a normal or near-normal lifespan.

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.

There is currently no way to prevent lupus.

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

To evaluate initial symptoms and treat mild lupus, you can talk with:

• A family medicine physician or an internist.
• A rheumatologist.
• An immunologist.

For long-term management of complicated lupus, talk with:

• A rheumatologist.
• An immunologist.

For more complicated cases of lupus, a rheumatologist is usually the primary doctor. Other specialists are consulted as needed.

• For mental health problems such as depression, anxiety, psychosis, or other behavioral changes, see your family medical doctor or internist, or a psychiatrist.
• For the treatment of organ problems, a doctor who specializes in diseases of that particular organ system may work together with a rheumatologist or immunologist. The following practitioners typically treat vital organ problems caused by lupus:
  • Cardiologist
  • Dermatologist
  • Hematologist
  • Nephrologist
  • Neurologist
  • Pulmonologist

Reduce stress and tiredness

• Keep your daily schedule as simple as possible.
• Keep your list of things to do as short as you can.
• Exercise regularly. A daily walk or swim, for example, can lower stress, clear your head, improve your mood, and help fight tiredness.
• Use meditation, yoga, or guided imagery to relax.
• Get plenty of rest. Some people with lupus need up to 12 hours of sleep every night.
• Pace yourself. Do not do too many activities.
• Ask others for help. Do not try to do everything yourself.
• Take short breaks from your usual activities. Think about cutting down on work hours when your symptoms are severe.
• If you think that depression or anxiety is making you feel more tired, talk to your doctor, a mental health professional, or both.

Take care of your skin

• Ask your doctor about the use of corticosteroid creams for skin symptoms.
• If you are bothered by the way a lupus rash looks on your face or if you have scars from lupus, you can try makeup, such as Covermark, to cover the rash or scars.
• Stay out of the sun, especially when the sun's rays are the strongest, usually between 10 a.m. and 4 p.m. If you must be in the sun, cover your arms and legs, and wear a hat. Make sure to use a broad-spectrum sunscreen that has a sun protection factor (SPF) of 50 or higher. Put more sunscreen on after swimming, sweating, or toweling off.

Practice good self-care

• Learn more about lupus and how to take care of yourself.
• Take your medicines exactly as prescribed. Call your doctor if you have any problems with your medicine.
• Do not smoke. If you need help quitting, talk to your doctor about stop-smoking programs and medicines. These can increase your chances of quitting for good.
• Eat a healthy, balanced diet. A balanced diet includes whole grains, dairy, fruits and vegetables, and protein. Eat a variety of foods from each of those groups so you get all the nutrients you need.
• Avoid infections such as COVID-19, colds, and the flu. Talk with your doctor about any vaccines you may need, including COVID-19, flu, and pneumococcal vaccines. If you do get sick or think you are getting an infection, talk with your doctor so you can treat your symptoms right away.
• Brush and floss your teeth each day. See your dentist two times a year.
• Get regular eye exams.
• Build a support system of family, friends, and health professionals.

The chances of getting lupus are higher in people who:

• Are female.
• Are Black.
• Are ages 15 to 45.
• Have a family history of lupus.
• Take medicines that are linked with drug-induced systemic lupus.

Certain things can trigger lupus flares. These may include:

• Exposure to ultraviolet light. This is usually from sunlight.
• Smoking. Smoking can trigger flares and may also make them more severe.
• Some medicines.
• Some infections. Some people who have cytomegalovirus (CMV), parvovirus (such as fifth disease), and hepatitis C infections eventually get lupus. The Epstein-Barr virus has been linked to lupus in children.
• Chemical exposure. Suspected chemical toxins include trichloroethylene in well water and silica dust. Hair dyes and straighteners, linked to lupus in the past, are no longer thought to trigger it.

Lupus (systemic lupus erythematosus) doesn't usually affect a woman's ability to conceive. But if you are having a lupus flare or are taking corticosteroid medicines, you may have irregular menstrual cycles. This can make it hard to plan a pregnancy.

If you plan to have a baby or are already pregnant, it's very important that you and your doctor discuss how lupus may affect your pregnancy.

• Most women with lupus have successful pregnancies. Women who become pregnant during lupus remission are more likely to have a successful pregnancy.
• Lupus increases the risk of fetal and pregnancy problems. This includes premature birth and stillbirth. This risk is greatest among women who have kidney problems or antiphospholipid, anti-Ro, or anti-La antibodies.
• Women are encouraged to wait until lupus is under control for at least 6 months before they try to become pregnant.
• Some women with lupus need to take medicines or have regular fetal monitoring or ultrasound while they are pregnant to reduce the risk of problems.
• It's not clear if women with lupus are more likely to have flares during pregnancy.

Talk with your doctor about which medicines you can take during pregnancy.

• Some lupus medicines, like acetaminophen and prednisone, are considered safe during pregnancy. Others may not be safe, such as immunosuppressant medicines and cytotoxic medicines.
• Your doctor may want you to avoid nonsteroidal anti-inflammatory drugs (NSAIDs) while you're pregnant. These include ibuprofen.

If you have miscarried before, expect that your pregnancy will be closely watched. Talk to your doctor about whether you have tested positive for antiphospholipid antibodies. If so, anticoagulant treatment may improve your chances of having a healthy pregnancy.

People who have lupus may develop problems with different organs and systems of the body. These include problems with:

The blood.

There may be changes in the blood cells, anemia, and changes to organs related to circulation, such as the spleen or lymph nodes. Some people with lupus produce antibodies that attack certain blood-clotting factors, causing the blood to clot too easily. This is called antiphospholipid syndrome (APS). It can lead to mild or severe problems. Some of these are stroke, heart attack, deep vein thrombosis, miscarriage, and preeclampsia.

The lungs.

Inflammation of the tissues around the lungs may cause no symptoms. But sometimes it can cause painful breathing, coughing, or chest pain.

The heart.

Inflammation of the sac around the heart is the most common lupus-related heart problem. There may also be hardening of the arteries and diseases of the heart valves.

The kidneys.

People who have lupus might notice swelling of the legs and ankles. They might have abnormal lab results when their urine is tested. Some people develop serious kidney disease.

The nervous system and mental health.

Some of these problems include mild memory loss, headaches, problems with vision, muscle weakness, and loss of feeling in the feet and hands. Many people who have lupus become anxious or depressed. They might have delusions, hallucinations, or episodes of manic behavior.

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.

The exact cause of lupus isn't known. Experts believe that some people are born with certain genetic mutations that affect their immune systems and make them more likely to get lupus.