Lupus in Women

Lupus is an autoimmune disease that affects more women than men. Although anyone can develop lupus, the disease is far more common in women — especially women of color — compared to men. The symptoms and complications of lupus can have a big impact on a woman’s life.1

How Many Women Are Affected by Lupus?

The Lupus Foundation of America estimates that about 1.5 million Americans and 5 million people worldwide are living with lupus — and 90 percent of them are women. Lupus is usually diagnosed in people between the ages of 15 and 44.1

Symptoms of Lupus in Women

Lupus symptoms in women can range from mild to severe. The most common symptoms include:2

  • Fatigue
  • Hair loss
  • Joint pain
  • Fever
  • Skin rashes
  • Photosensitivity (sun sensitivity)
  • Kidney problems
  • Dry eyes
  • Dry mouth

No two people with lupus are the same, and symptoms can vary from person to person. Additionally, symptoms can change over time or happen more or less frequently.2

Some women notice that they have more severe symptoms at times when they have higher levels of the hormone estrogen in their bodies, such as before a menstrual period or during pregnancy.3

How Does Lupus Affect Women?

Lupus is a chronic (long-term) condition without a cure. The symptoms of lupus can impact a woman’s quality of life and cause many complications.2

Pregnancy Complications with Lupus

Lupus is most commonly diagnosed in women of childbearing age. Any pregnancy in women with lupus is considered a high-risk pregnancy because of the possibility of pregnancy complications.4 Potential pregnancy complications include:5

  • High blood pressure and preeclampsia
  • Kidney problems
  • Blood clots
  • Miscarriage (pregnancy loss) or stillbirth
  • Premature birth
  • Having a baby with neonatal lupus or heart block

Most women with lupus can have healthy pregnancies, but it may take additional planning and medical care. It’s best to wait to get pregnant until your lupus is under control. You may have to change your lupus treatment several months before you try to get pregnant. Some lupus medications, like methotrexate (Rheumatrex®), can cause serious birth defects.4

Pregnancy can cause lupus symptoms to get worse (flare). Lupus flares are most common in the first or second trimester.4

Increased Risk of Health Problems with Lupus

Lupus can cause complications that increase the risk of developing certain health problems. Additionally, health problems can occur at an earlier age in women with lupus compared to in women without lupus.2 Up to 15 percent of people with lupus die prematurely from lupus complications.1,6

Women with lupus may have an increased risk of the following health conditions:6

  • Kidney disease
  • Heart disease
  • Infections
  • Osteoporosis
  • Cancer

These medical conditions may be related to the inflammation that lupus causes, or the medications used to treat lupus. Lupus-related symptoms like pain and fatigue can also make it hard to get enough physical activity, increasing the risk of heart disease and osteoporosis.2

Economic Impact of Lupus

Not only does lupus affect your health, but it can also be costly. One study estimates that the healthcare costs for a person with lupus are over $33,000 each year.7

A survey by the Lupus Foundation of America found that more than half of people with lupus lost all or part of their income due to complications from lupus, which can amount to between $1,000 to $20,000 per year in lost productivity. This means that a person with lupus may lose up to $50,000 every year from healthcare costs or lost productivity.1

People with more severe lupus or lupus that affects their kidneys (lupus nephritis) may have even higher annual costs.1

Lupus and Women of Color

Women of color are more likely to develop lupus and have more severe disease compared to white women.2

African American women are three times more likely to develop lupus than white women.2 Lupus affects about 1 in every 537 young African American women.1 Lupus is also more common in Hispanic/Latina, Asian American, Native American, Alaska Native, Native Hawaiian, and Pacific Islander women.1

Lupus in women of color tends to be more severe and develops at a younger age. African American people with lupus tend to have more active disease and more organ system involvement, as well as less social support compared to white people with lupus.1

Lupus can also be more deadly in women of color. A Lupus Foundation of America study found that lupus was in the top 20 leading causes of death in all women aged 5 to 64 years. However, lupus was in the top 10 leading causes of death for Black and Hispanic women aged 15 to 44 years, after excluding external injury causes of death.1

Women of Color and Clinical Trials for Lupus

Although more women of color are affected by lupus, they are underrepresented in clinical trials. Diversity in clinical trials is important to provide accurate outcomes for real-world patients.8

Read more about lupus clinical trials exploring new lupus treatments.