Lupus (systemic lupus erythematosus)

What is lupus?

The most common type is systemic lupus erythematosus (SLE). “Systemic” means it can affect many parts of the body, including the skin, joints, kidneys, heart, lungs, blood cells, and brain¹. Other types mainly affect the skin⁵.

Lupus often moves between flares, when symptoms get worse, and remission, when they ease. Flares can be mild or serious, and they are hard to predict¹. With treatment, many people with lupus manage the disease and live full lives^1,3.

Symptoms of lupus

Lupus symptoms differ from person to person and can change over time¹. They may include:

• Painful, swollen joints and morning stiffness¹
• Feeling very tired, and fevers¹
• A rash across the nose and cheeks, sometimes called a butterfly rash¹
• Rashes after time in the sun¹
• Hair loss¹
• Sores in the mouth or nose, often painless¹
• Fingers or toes that turn white, blue, or red in the cold (Raynaud’s phenomenon)¹
• Swelling in the legs or around the eyes¹
• Chest pain when you take a deep breath¹

Lupus can also affect the kidneys (lupus nephritis), which may cause no symptoms at first. That is one reason regular blood and urine tests matter^1,3.

Causes and risk factors

The cause of lupus is not known. Genes, hormones, and the environment likely all play a part^1,4. Sunlight, smoking, and a lot of stress may play a part in some people⁵.

Anyone can get lupus, but¹:

• Women get it about 9 times as often as men
• It most often starts between ages 15 and 45
• It is more common in Black, Asian, Hispanic, and Native American people
• A family member with lupus or another autoimmune disease raises the chance

How lupus is diagnosed

No single test can diagnose lupus, and its symptoms can look like other conditions^2,4. A rheumatologist will:

• Ask about your symptoms, including ones that have gone away, and review past records²
• Ask about autoimmune disease in your family²
• Do a full physical exam²
• Order blood tests, starting with an ANA test. Almost everyone with lupus has a positive ANA, but many healthy people do too^2,3
• Order more specific antibody tests, such as anti-double-stranded DNA (anti-dsDNA) and anti-Smith, along with a blood count and kidney tests²
• Check your urine for protein²

Sometimes a small skin or kidney sample (biopsy) is needed².

Treatment options

Treatment aims to control symptoms, prevent flares, keep disease activity low, and protect your organs². The right mix depends on which parts of your body are affected³. Options include²:

• Anti-inflammatory medicines for joint pain and fever
• Antimalarial medicines, which can help with fatigue, joint pain, and rashes and may help prevent flares
• Steroids, at the lowest dose that works, to calm inflammation
• Immune-suppressing medicines, by mouth or by IV
• Biologic medicines, given by injection or IV

Each medicine has possible side effects, so regular visits and blood tests are part of care³.

Living with lupus and when to get care

Many people with lupus work, exercise, and keep up with family life³. Steps that help^3,4:

• Take medicines as prescribed and keep regular visits
• Protect your skin from the sun with clothing, a hat, and sunscreen
• Stay active, which supports your joints and heart
• Talk with your clinician before planning a pregnancy

Talk with your clinician about seeing a rheumatologist if you have symptoms like the ones above, or if a current lupus treatment is not working well for you. Tell your care team about any new swelling in your legs or changes in your urine³.

When to go to the emergency room

Call 911 or go to the nearest emergency room if you can’t breathe, have severe pain, or think you may be having a heart attack⁵.