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Lupus and Women

From the FDA Office Of Women's Health

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What is lupus?

Lupus is a chronic autoimmune disease that causes the immune system to mistakenly target healthy cells, tissues, and organs. This results in pain and inflammation in the body and can lead to permanent damage. Lupus symptoms vary from person to person and can range from mild to severe. 

There are four main types of lupus, all with different manifestations, symptoms, and treatments:

  • Systemic lupus erythematosus (SLE) is the most common and most serious type of lupus. SLE can affect the brain, lungs, kidneys, joints, skin, and blood vessels. While there is no cure for SLE, certain medical treatments and lifestyle changes can help lessen the symptoms.
  • Neonatal lupus can affect some fetuses who are exposed to lupus in the womb during pregnancy. It usually disappears by the time the baby is six months old. However, it can cause serious skin, liver, heart, or blood problems.
  • Cutaneous lupus erythematosus (CLE) causes a rash or swelling on the skin, usually where the skin is exposed to the sun. These rashes can lead to permanent scarring in some cases. CLE has no cure, but certain medical treatments and lifestyle changes, such as limiting exposure to the sun, can help lessen the symptoms.
  • Drug-induced lupus is caused by a reaction to certain medications. Its symptoms can be similar to SLE. Drug-induced lupus usually disappears once the medication is stopped.

What causes lupus?

The causes of lupus are not yet known, but we do know that lupus is not contagious. Research suggests that there are various risk factors that may contribute to developing lupus including:

  • Family history or genetics: Research shows that certain genes may be a factor in developing lupus. However, most people with lupus do not have lupus in their family.
  • Hormones: Since lupus affects more women than men, researchers believe that estrogen and other female hormones may play a role in triggering the disease. In some people, lupus symptoms can worsen around menstrual periods and during pregnancy when estrogen levels are higher. 
  • The environment: Sunlight, stress, smoking, certain medicines, and viruses may trigger lupus symptoms.
  • Immune and inflammatory influences: It is possible that lupus happens in people whose bodies do not remove damaged or dead cells normally. This could make the immune system think it needs to fight against itself. 

Who is affected by lupus?

Anyone can get lupus, but it is much more common in women than in men. About 9 out of 10 people diagnosed with lupus are women ages 15 to 44. Lupus is also more common in African American, Asian, Hispanic/Latino, and American Indian/Alaska Native (AI/AN) women. African American and AI/AN women are up to three times more likely than white women to develop lupus. Additionally, African American people with lupus have higher rates of death from lupus and tend to die younger.

Lupus can also raise a woman’s risk of other serious health conditions. These include heart disease, osteoporosis, and kidney disease. Notably, more than half of all people with lupus have kidney problems.  

What are the symptoms of lupus?

Lupus can have different symptoms in different people and may change over time. Symptoms for systemic lupus erythematosus may include:

  • Prolonged or extreme fatigue
  • Muscle and joint pain, arthritis
  • Rash
  • Fever
  • Hair loss
  • Mouth sores
  • Chest pain
  • Sun or light sensitivity
  • Anemia
  • Memory problems
  • Blood clotting
  • Eye disease
  • Kidney problems
  • Swollen glands
  • Change of color in the fingers and toes

Some people with lupus are prone to flares—which means symptoms may be mild sometimes and other times severe, requiring medical attention. People with lupus might also have times when symptoms go away.

Here are some tips to help control lupus symptoms:

  • See your health care provider regularly
  • Learn the triggers and signs for your lupus flares to help you prevent them or make them less severe
  • Follow your treatment plan and take care of yourself by reducing stress
  • Limit time spent in the direct or reflected sunlight and other sources of UV light (fluorescent and halogen lights). Apply sunscreens that block both UV-A and UV-B and have a sun protection factor (SPF) ≥55
  • Eat healthy, exercise, and get enough rest 
  • Build an emotional support system
  • If you think a flare is coming, call your health care provider

How is lupus diagnosed and treated?

Lupus can be hard to diagnose because it has many symptoms that come and go. Lupus symptoms may also be similar to symptoms of other disorders or diseases. There is no one test to diagnose lupus. Your health care provider may ask about your medical history and your family’s medical history, perform a complete medical exam, do blood tests, take urine samples and x-rays, and do a biopsy of the skin or kidney before diagnosing lupus.

While there is no cure or single therapy for lupus that targets all manifestations for lupus, there are several FDA approved therapies available specific for lupus.  Health care providers treat lupus based on symptoms, clinical examination, and testing. The goals of treatment are to manage your symptoms, prevent flares, stop or delay any damage to your joints or organs, reduce inflammation, and increase your quality of life. Your health care provider may prescribe medications to help treat your symptoms of lupus. These treatments will depend on the type of lupus you have.  

Some types of medications that are used include:

  • Anti-inflammatory drugs to help treat pain or fever.
  • Antimalarials, which are drugs to prevent and treat malaria have been found to help balance the immune system and help control or prevent lupus flares.
  • Corticosteroids, which help lower inflammation.
  • Immunosuppressants, which help curb the immune system’s response.
  • B-lymphocyte stimulator (BlyS) protein inhibitor, which limits the amount of abnormal B cells that create antibodies that can cause organ damage.
  • Inhibitor to the type I interferon receptor, which limits the production of interferon, may improve chronic inflammation in lupus.

Talk with your health care provider about your symptoms, medical treatment options and their risks and benefits. Your provider can answer your questions and together you can decide which treatment is right for you.

Some people find that they need to make changes to what they eat based on symptoms, treatment plan, or the side effects of medications. For instance, if your medications cause you to gain weight, you may want to follow a healthy low-calorie diet. Talk with your health care provider about whether you need to change your diet.

What do you need to know about lupus and pregnancy?

If you have lupus and plan to become pregnant, you should talk with your health care provider and start planning for pregnancy early. In general, lupus should be under control for six months before you become pregnant. Being pregnant while your lupus is active can cause miscarriage, stillbirth, neonatal lupus, and other serious health problems like preeclampsia (a sudden increase in blood pressure after the 20th week of pregnancy and may include protein in the urine and very high blood pressure.)  Also, pregnancy is very risky for certain groups of women with lupus, including those with high blood pressure, a history of preeclampsia, or lung, heart, or kidney problems. 

Pregnancy can also cause your lupus to flare. Flares may require medical attention or an early delivery. Lupus flares can also be dangerous for your baby. Neonatal lupus can happen when a developing fetus is exposed to lupus during pregnancy. While neonatal lupus typically goes away by the time the baby is six months old, it can cause serious problems in the newborn with the skin, liver, blood, and heart.

Breastfeeding is possible for women with lupus. However, some medicines that help control lupus can pass through breastmilk to your baby. Talk with your health care provider about your medicines before you begin breastfeeding.

Women in clinical trials 

Clinical trials are research studies that inform the safety and effectiveness of new treatments. It is important that women take part in clinical trials to help doctors and scientists learn more about lupus and potential treatment options. Visit the Women in Clinical Trials webpage to learn how you can make a difference.

Lupus is a serious condition that can cause pain, inflammation, and organ damage, but with the right treatment and care, many women with lupus can live full and active lives. If you have any lupus symptoms or are concerned that you may have lupus, talk with your health care provider.

For resources and materials on other women's health topics, visit www.fda.gov/womens. 

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