What is lupus?

Systemic lupus erythematosus (SLE or lupus) is a disease that causes your body’s immune system to attack its own cells and tissues. It causes episodes of inflammation to various parts of the body. It can affect your joints, tendons, and skin. It can affect blood vessels. And it can affect organs, such as the kidneys, heart, lungs, and brain. It can cause rashes, fatigue, pain, and fever. The heart, lungs, kidneys, and brain are the organs most affected. Severe lupus can cause harm to organs and other serious problems.

Lupus is a long-term (chronic) disease. It affects each person differently. The effects of the illness range from mild to severe. Symptoms of lupus may come and go. These are sometimes known as flare-ups, periods of remission, and relapse. Lupus has no known cure, but medicines may help manage symptoms. You can help manage lupus by living a healthy lifestyle and working with your healthcare provider. In children, lupus tends to get worse more quickly than in adults. Children may be affected in different ways, having mild to life-threatening symptoms.

What causes lupus?

Your body protects itself with the immune system. The immune system makes proteins called antibodies. These protect against bacteria, viruses, and cancer cells. In some people, the immune system makes antibodies that attack the body’s own cells. This leads to inflammation and tissue damage in the body.

Experts think lupus may be caused by a mix of genes and other factors. The other factors may include being exposed to the Epstein-Barr virus (EBV), which causes mononucleosis. Other factors, such as sunlight, stress, or hormones, may be part of the cause of lupus.

Who is at risk for lupus?

Lupus occurs most often in young women in their late teens and adult women younger than age 45. The female hormone estrogen is linked with lupus. Lupus also affects more African Americans, Asian Americans, Hispanics, and American Indians than whites. Lupus in children occurs most often in those age 15 and older. But it can happen in children or adults of any age.

What are the symptoms of lupus?

Lupus symptoms can appear in many parts of the body. Symptoms can occur a bit differently in each person. They may come and go. Some of the common symptoms of lupus are:

• Anemia

• Butterfly-shaped rash on the nose and cheeks of the face (malar rash)

• Tiredness (fatigue)

• Fever

• Hair loss

• Loss of appetite

• Memory problems

• Pale, blue, or red fingers triggered by cold, stress, or illness (Raynaud phenomenon)

• Raised rash on the head, arms, chest, or back

• Rashes caused by sunlight

• Sores in the mouth or nose

• Swollen glands

• Swollen or painful joints (arthritis)

• Weight loss

The symptoms of lupus can look like other health problems. Make sure to see your healthcare provider for a diagnosis.

How is lupus diagnosed?

Lupus may be hard to diagnose because many of the symptoms could be from other causes. The symptoms also develop slowly over time.

To diagnose lupus, your healthcare provider will ask about your health history and your symptoms. Your healthcare provider may suspect you have lupus if you have 4 or more symptoms and no specific cause. You may have tests to help confirm the diagnosis. You may have blood tests, such as: 

• Antibody blood tests. These tests are done to look for certain kinds of antibodies in your blood. The main test for lupus is the antinuclear antibodies (ANA) test. Most people with lupus will have a positive ANA test result. Other tests check for other kinds of antibodies.

• Complete blood count (CBC). This test checks for low counts of red blood cells, white blood cells, and platelets.

• Complement test. This test is done to measure the level of complement. This is a group of proteins in the blood that help destroy foreign substances. Low levels of complement in the blood are often linked with lupus.

• Erythrocyte sedimentation rate (ESR or sed rate). This test looks at how quickly red blood cells fall to the bottom of a test tube. When swelling and inflammation are present, the blood’s proteins clump together and become heavier than normal. They fall and settle faster at the bottom of the test tube. The faster the blood cells fall, the more severe the inflammation.

• C-reactive protein (CRP).  This protein shows up when inflammation is found in the body. ESR and CRP show similar amounts of inflammation. But in some cases, one will be high when the other is not. This test may be repeated to check your response to medicine.

You may also have other tests, such as:

• Urine tests.  These look for blood or protein in the urine. The test can assess your kidney function.

• Biopsies. A biopsy is when tiny pieces of tissue are taken from the body to be checked under a microscope. To look for signs of lupus, biopsies may be done of the skin and kidneys. The test looks for damage to these organs.

• X-rays. This test uses a small amount of radiation to create images of organs, bones, and other tissues.

How is lupus treated?

There is no known cure for lupus, but treatment can help manage it. You may work with a rheumatologist. This healthcare provider specializes in lupus, arthritis, and other related diseases. You may also work with other kinds of healthcare providers. These include specialists in kidney disease, blood disorders, immune disorders, and heart problems. You may also meet with a social worker to help you manage your treatment plan. The goals of treatment include treating symptoms, preventing flare-ups of lupus, and helping reduce damage to the body.

Your healthcare provider may give you medicine to help treat symptoms. Medicines can’t cure lupus, but they can help prevent organ damage or suppress the disease. Your healthcare provider will prescribe 1 or more medicines to help you feel better. Be sure to take them as directed. You may be given medicines, such as:

• Nonsteroidal anti-inflammatory drugs (NSAIDs). These can be used to help relieve swelling, pain, and fever.

• Antimalarial medicine. A medicine used to prevent and treat malaria can help ease some lupus symptoms. It can treat fatigue, rashes, joint pain, and mouth sores. The medicine may also help prevent blood clots.

• Corticosteroid medicines. These can help people when lupus affects the kidneys, lungs, heart, or nervous system.

• Medicines that suppress the immune system.  These can help treat severe symptoms of lupus that has attacked organs.

• Other medicines.  A type of medicine called a biologic may be an option. Clinical trials are also being done to test other medicines that may help people with lupus.

Talk with your healthcare providers about the risks, benefits, and possible side effects of all medicines.

Lupus can also be managed by keeping a healthy lifestyle. Here are ways to take care of yourself:

• Get enough sleep. Aim for 8 to 10 hours a night. Take naps and breaks during the day.

• Eat a healthy diet.

• Maintain a healthy weight.

• Exercise a few times a week, at least.

• Learn ways to reduce or manage stress.

• Stay out of the sun as much as you can. Wear clothes that cover your skin. Use sunscreen with an SPF 15 or higher.

• Treat infections right away.

• Don’t smoke.

Work with your healthcare provider to manage your lupus. Get regular checkups and tests.

Children with lupus should not get vaccines with live viruses. This includes chickenpox, measles-mumps-rubella, and oral polio vaccines. Talk with your child’s healthcare provider about all vaccines.

What are possible complications of lupus?

Lupus can range from a mild disease to a life-threatening disease that damages organs. It may affect your ability to work. Possible complications can include:

• Swelling in legs and ankles (edema)

• Inflammation of tissue around the lungs that causes chest pain when breathing (pleurisy)

• Inflammation of the lining of the heart (pericarditis)

• Fluid around the lungs, heart, or other organs

• Seizures

• Kidney failure

• Miscarriage

If you are a woman of childbearing age, talk with your healthcare provider about the risks of pregnancy and lupus. Lupus symptoms can flare up during pregnancy. Pregnancy with lupus is high risk, so you will need extra care from your healthcare team. You may need to see your healthcare provider more often.

Living with lupus

Lupus can be a life-changing diagnosis. Lupus symptoms often come and go over time. It is important to know the warning signs that a relapse or flare-up is going to happen. Each person may have different warning signs. They may include fatigue, pain, rash, or fever. Knowing your warning signs can help you work with your healthcare provider to adjust your medicine. It is also important to get 8 to 10 hours of sleep each night, stay current on your vaccines if advised, and keep a healthy lifestyle.

When should I call my healthcare provider?

If you have questions about your medicines, your symptoms get worse or you have new symptoms, let your healthcare provider know.

Key points about lupus

• Lupus is a disease that causes episodes of inflammation and damage to many parts of the body, including the skin and organs.

• It is caused by both genes and environmental factors.

• Symptoms include a rash, fever, joint inflammation and pain, and sensitivity to the sun.

• Lupus can range from a mild disease to a life-threatening disease.

• There is no known cure for lupus, but medicines and lifestyle changes can help you manage symptoms of the disease.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.

• Before your visit, write down questions you want answered.

• Bring someone with you to help you ask questions and remember what your provider tells you.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new directions your provider gives you.

• Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.

• Ask if your condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if you do not take the medicine or have the test or procedure.

• If you have a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your provider if you have questions.