Lupus is an autoimmune disease, which means the body’s immune system attacks its own tissues and organs. The most common form is systemic lupus erythematosus (SLE), which accounts for about 70 percent of cases. Many people think of SLE when they hear the word “lupus.” The other three main types are cutaneous lupus erythematosus, neonatal lupus, and drug-induced lupus.

The word “systemic” in “systemic lupus erythematosus” means the condition can affect the entire body, causing inflammation and tissue damage in multiple organs or organ systems. SLE often affects the skin, joints, brain, lungs, heart, nervous system, and blood vessels. The more severe complications include kidney inflammation or damage, which is called lupus nephritis.

SLE is a complex and chronic disease that affects everyone differently. The condition can be mild or life-threatening. Although there is no cure for SLE, treatments are available to help manage the symptoms. This article discusses four facts about the demographics, symptoms, diagnosis, and treatment of SLE.

1. SLE Risk Factors Include Sex, Age, and Race

There’s no single known cause of lupus, but some people are more likely to develop the condition. About 90 percent of people with lupus are women, according to the Centers for Disease Control and Prevention (CDC). Most people are diagnosed between ages 15 and 45. Lupus is more common among Black or African American, Hispanic, Asian, American Indian, or Alaska Native people than among white people.

Having some or all of these characteristics doesn’t mean you’ll develop SLE. It just means you have a higher risk than the general population. Factors other than sex, age, and race can also increase your risk.

If you have a parent, sibling, or child with SLE, you have a greater risk of developing it than people with no family connection to the disease.

For example, SLE runs in families. If you have a first-degree relative (parent, sibling, or child) living with SLE, you have a greater risk of developing it compared with people who have no family connection to the disease. Environmental factors, such as sun exposure, smoking, and viral infections, are also suspected of causing or triggering SLE.

Lupus and Health Disparities

Women and people of color are disproportionately affected by lupus. The condition is two to three times more prevalent among African American, Hispanic/Latina, Asian American, Native American, Alaska Native, Native Hawaiian, and other Pacific Islander women than white women, per the Lupus Foundation of America.

SLE affects 1 in 537 Black females, according to a study published in Arthritis & Rheumatology. The researchers also determined that:

• Black people are more likely to develop SLE at a younger age.
• Black people are more likely to experience severe SLE complications.
• SLE death rates are higher among Black people than white people.

The reasons for these poorer health outcomes are only partly attributable to genetics, noted the study authors. Social and societal factors are more strongly linked to disease progression than genetic factors.

Researchers have found that bias in medical care may also play a role in health outcomes. For example, there’s a lack of Black representation in clinical trials. In addition, Black and Hispanic people are less likely than white people to receive specialist referrals from their doctors, according to a 2023 study in the journal ACR Open Rheumatology.

Social determinants of health associated with race and poverty are strongly linked to health disparities in people with SLE, noted the authors of the 2023 study: “Measures of socioeconomic status, including poverty, unemployment, food insecurity, lack of safe and affordable housing, crime, stress, racial segregation, and discrimination, are associated with race and ethnicity in the US and are risk factors for poor outcomes in lupus.”

2. SLE Symptoms May Mimic Those of Other Diseases

The symptoms of SLE vary from person to person, may be worse on some days than others, and can change over time.

Common symptoms include:

• Fatigue
• Fever
• Rash, most commonly across the nose and cheeks (butterfly rash)
• Pain or swelling in the joints
• Swelling in the feet and around the eyes
• Ulcers or lesions in the nose and mouth
• Hair loss

Lupus symptoms can also include headaches, depression, chest pain, heart disease, shortness of breath, seizures, swollen glands, blood cell abnormalities, anemia, sensitivity to sun exposure, and more.

Some symptoms of SLE mimic those of other illnesses. Some of the most common lupus symptoms, fatigue and joint pain, are also common in other autoimmune conditions. These similarities can make it challenging to diagnose SLE. People with lupus are often misdiagnosed with arthritis, fibromyalgia, chronic fatigue, skin diseases, anxiety, and depression — or they may never get a diagnosis.

If you notice any changes to your health, you may want to write down a description of what you’re feeling, including when and how often it occurs. Detailed notes can help your healthcare provider determine an accurate diagnosis or refer you to a rheumatologist for further testing.

Common complications of SLE include heart problems and kidney problems. If you experience a fluttering heartbeat, swollen fingers or ankles, or foamy urine, contact your doctor right away.

3. No Single Test Can Diagnose SLE

The first step in accurately diagnosing SLE involves a physical exam. Your doctor should ask about your medical history, family history, and any recent changes to your health. Depending on your signs and symptoms, your primary care doctor may refer you to someone who specializes in rheumatology or dermatology.

No single blood test or imaging test can provide a definitive SLE diagnosis. However, if your doctor suspects SLE based on the physical exam, they'll likely order tests to help confirm SLE or rule out other diseases. Your doctor may order:

• A series of blood tests
• A urine analysis
• A biopsy of your skin or kidneys (if your kidneys are affected)
• Imaging tests such as X-rays or CT scans
• A cardiac (heart) evaluation with an electrocardiogram and echocardiogram

The blood tests may include panels that check for autoantibodies, which are immune system proteins linked to lupus. These test results need to be considered alongside your symptoms and physical exam findings, so it’s important to review them carefully with your healthcare provider.

If you’re diagnosed with SLE, your care team will likely include your primary care physician and a rheumatologist. Depending on your needs, you may see other doctors who treat SLE, including a nephrologist (a specialist in kidney disease) or a cardiologist — SLE is associated with a higher risk of heart disease.

4. Treating SLE Requires a Personalized Approach

Although there is no cure for SLE, researchers continue to develop therapies to help manage symptoms, improve quality of life, and prevent organ damage. The treatment plan you and your doctor decide on together will depend on factors such as your:

• Age
• Overall health
• Medical history
• Type and severity of symptoms

Your doctor might recommend SLE treatment options such as antimalarials, nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, and immunosuppressants.

Antimalarial Drugs

Medications developed to treat malaria are also commonly used to treat SLE. Antimalarials reduce the level of antibodies produced by the immune system in people with lupus. These proteins in the blood attack healthy cells and tissues, causing inflammation, pain, and other SLE symptoms. Chronic use of antimalarials is linked to eye damage, so frequent eye checkups are recommended when using these drugs.

Nonsteroidal Anti-Inflammatory Drugs

You may have used aspirin, ibuprofen (Motrin), or naproxen to treat pain, swelling, or a fever. These are nonsteroidal anti-inflammatory drugs, and they can be used to treat those same symptoms in people with SLE. NSAIDs block the production of certain chemicals that cause inflammation.

Corticosteroids

Corticosteroids can help reduce pain and inflammation. Also called steroids, these drugs suppress the immune system and overactive white blood cells. Depending on the types of symptoms you’re experiencing, your doctor may prescribe corticosteroids that are taken orally (by mouth), given intravenously (through a vein), or applied topically (on your skin). Because they can result in unwanted side effects, steroids are usually used short term and as a bridge to mainstay therapy.

Immunosuppressants

Your doctor may recommend immunosuppressants, which help stop your immune system from attacking healthy tissues. Doctors may prescribe immunosuppressants to treat SLE if they suspect kidney problems or potential damage to the brain, heart, lungs, or other organs.

A newer class of drugs called biologics is also being used to treat SLE. These drugs suppress specific parts of the immune system rather than the entire system, and they can be effective at slowing or stopping inflammation and joint or organ damage. Biologics are a subclass of disease-modifying antirheumatic drugs (DMARDs), which also include antimalarials.

Chimeric Antigen Receptor T-Cell Therapy

A 2024 study found that chimeric antigen receptor (CAR) T-cell therapy, which was originally developed for cancer, might help people with SLE. This treatment works by modifying a person’s T-cells to fight the disease in a new way. Although more research is needed, CAR T-cell therapy could become an option for lupus treatment in the near future if approved.

Other Drugs

SLE and the medications used to treat it can cause blood clots, osteoporosis (brittle bones), and other health issues. Your treatment plan may also include drugs such as blood thinners, cholesterol medications, thyroid medications, and antidepressants.

Communicate With Your Doctor

It can take several attempts to find a medication combination that works for you, so try to be patient. You may also need to periodically change medications or adjust dosages to keep up with changing or worsening symptoms, especially during flare-ups, when symptoms are at their worst. Be sure to tell your doctor about any side effects you experience, and if you have any questions about your treatment plan, ask.

You may need to periodically change medications or adjust dosages to keep up with changing or worsening symptoms, especially during flare-ups.

A lupus diagnosis can be life-changing, but help is available, and you are not alone. Find a doctor you trust, research the disease, and consider joining a support group or finding other ways to connect with those who are on a similar journey.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 233,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Are you living with SLE or another autoimmune condition? Do you have questions or tips regarding symptoms, diagnosis, and treatments? Share your experience in the comments below, or start a conversation by posting on your Activities page.