Understanding Systemic Lupus Erythematosus (Lupus)

Systemic lupus erythematosus is a disease that causes your body’s immune system to attack its own cells and tissues. It can affect your joints and nervous system. It can affect blood vessels. And it can affect organs such as the skin, kidneys, lungs, and brain. It can cause rashes, extreme tiredness (fatigue), pain, and fever. Severe lupus can harm organs and cause other serious problems, including death.

Lupus is an ongoing (chronic) disease. It can be mild to severe. It is most common in young adult women. But it can occur in males and females of any age. Lupus has no cure, but medicines can help symptoms. And you can help manage lupus by living a healthy lifestyle and working with your healthcare provider.

What causes lupus?

Your body protects itself with the immune system. The immune system makes proteins called antibodies. These protect against bacteria, viruses, foreign bodies, 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. This is what happens in lupus as well as some other diseases. 

Healthcare providers don’t know why this happens. Experts think it may be caused by a mix of genes and other factors. The other factors may include certain viruses and allergies. Genetics do play a role in lupus. 


Lupus can appear in many parts of the body. Because of this, it can affect people in different ways. You may have only some of these symptoms. You are not likely to have all of these symptoms. Some of the common symptoms of lupus are:

  • Fatigue

  • Fever

  • Sores in the mouth or nose

  • Patchy hair loss

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

  • Rashes caused by sunlight

  • Swollen or painful joints (arthritis)

  • Muscle pain

  • Weight loss

  • Heartburn (acid reflux)

  • Stomach pain

  • Less blood flow in the fingers and toes

  • Headaches

  • Feeling dizzy

  • Abnormal amounts of blood cells

  • Bruising or bleeding

  • Depression

  • Confusion

Severe symptoms 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)

  • Seizures

  • Kidney problems

  • Miscarriage

  • Abnormal amounts of blood cells


What is remission?

Remission is when symptoms go away for a period of time. Lupus can go into remission. If lupus flares up again, your symptoms may return the same as before.

Possible complications of lupus

Lupus can cause harm to the body over time. This can lead to serious problems, such as:

  • Kidney disease (Lupus nephritis). Over time, this can lead to kidney failure. Kidney failure is treated with dialysis or kidney transplant. Kidney disease can cause certain symptoms. Call your healthcare provider if you have swelling in your hands, feet, or around your eyes. Also tell your healthcare provider if you have changes in urination. These include needing to go more often, pain when you urinate,  excessive bubbles in the urine, or dark urine.

  • Clogged arteries (atherosclerosis). This raises a person’s risk for heart attack, heart failure, and stroke. To help lower your risk for these problems, you can make certain lifestyle changes. Stop smoking, and get your blood pressure, diabetes, and cholesterol under control. Stay active and healthy.

Diagnosing lupus

Lupus is hard to diagnose. This is because it has many possible symptoms that could have other causes. And, the symptoms can happen slowly over time.

To diagnose lupus, your healthcare provider will ask about your health history. He or she will ask about your symptoms. Your healthcare provider may think you have lupus if you have 4 or more symptoms and he or she can find no specific cause. You may have tests to help confirm the diagnosis. The tests may include:

  • 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 (97%) with lupus will have a positive ANA test result. Other tests check for other kinds of antibodies.

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

  • Other blood tests. More blood tests may be done to look for other problems. Some look for signs of inflammation in the body. Some tests look for certain kinds of proteins. Other tests check how fast your blood clots.

  • Urine tests. These are to look for blood or protein in the urine. This can mean your kidneys are not working normally.

  • Biopsies. A biopsy is when tiny pieces of tissue are taken from the body to be checked with 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.

Treating lupus

Lupus is treated in many ways. You may work with a rheumatologist. This is a healthcare provider who specializes in lupus, arthritis, and other related diseases. You may also work with other kinds of healthcare providers. These include primary healthcare providers and 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 one 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 (steroids) 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 medicine called a biologic may be a choice. 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.

Managing your health

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

  • Find the right balance of rest and activity.

  • Eat plenty of vegetables, fruits, and grains.

  • Maintain a healthy weight.

  • Exercise a few times a week, at least. Try walking, swimming, or biking.

  • Learn ways to reduce or manage stress.

  • Stay out of the sun as much as you can. Use sunscreen with SPF 15 or higher.

  • Quit smoking if you currently smoke.

  • Stay educated and current on lupus information. 

Work with your healthcare provider to manage your lupus. Be sure to see your healthcare provider for regular checkups and tests.

Pregnancy and lupus

If you are a woman of child-bearing age, talk with your healthcare provider about the risks of pregnancy and lupus. Lupus symptoms can flare 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.

Getting support

Lupus is a chronic disease. It can put special demands on your life. Family and friends can be a good source of help and support. You may also want to join a support group for people with lupus. By talking with other people who have lupus, you may learn new ways to cope. You may also feel less alone. For more information, contact the following:

  • The Arthritis Foundation  800-283-7800  www.arthritis.org

  • Lupus Foundation of America  800-558-0121  www.lupus.org

  • The Lupus Initiative, American College of Rheumatology 404-633-3777 www.thelupusinitiative.org