Lupus

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Systemic lupus erythematosus (SLE) is a chronic disease that causes inflammation which most commonly affects skin and joints but can affect any organ in the body. SLE often starts in females during their fertility age, although it can sometimes start during childhood. The disease tends to be more common and worse in African Americans and Asians. ~ 20% of people with SLE develop the disease as children or teens. When lupus starts in childhood, it is called childhood-onset SLE, or cSLE.

What Are the Signs/Symptoms?

People can have non-specific symptoms including fever, rashes, joint pains and swelling, hair loss, sores in nose and mouth, and fatigue. People with SLE have higher risk of blood clots. SLE can flare during pregnancy and pregnant women can have higher risk of pregnancy complications, like miscarriages. Positive antinuclear antibodies (ANA) are present in nearly all people with lupus. Other antibody abnormalities may include +double stranded DNA, anti- smith, and antiphospholipid. Some symptoms may include rashes, sores, arthritis, kidney inflammation, and/or inflammation involving the lung, heart or nerves. It is important to look for any changes in urine and for new swelling in hands and feet which can all indicate possible issues with the kidneys associated with lupus. It is also vital to get regular bloodwork to monitor proteins that indicate signs of active disease and to monitor kidney function.

What Are Common Treatments?

The treatment goals are to decrease inflammation, address associated symptoms and prevent organ damage. The medications required depend on the severity of symptoms and organ(s) involved. Options include hydroxychloroquine (Plaquenil), steroids and immune decreasing medications that can include the following: mycophenolate, belimumab, voclosporin, anifrolumab. Each medication has its own possible side effects and working with the rheumatologist discussing benefits and risks is important.

Living with Lupus

Most people with lupus can live normal lives. The treatment of lupus has improved, and people with the disease are living longer. Take medications as prescribed and visit your rheumatologist regularly to prevent serious problems. Children and adolescents with lupus can have struggles of their own with diagnosis of lupus. For parents with children with lupus, understanding the disease and working closely with the healthcare team can be very beneficial in taking care of your child. There may be times when children and teens with lupus must take time off from school to allow their bodies to heal. Otherwise, they are encouraged to live as normal a life as possible. Going to school, playing with friends, exercising, having a healthy diet and continuing family activities are all important. Exercise for all patients is critical as this helps keep joints flexible and may prevent heart disease and strokes. Avoid excess sun exposure. Sunlight can cause a rash to flare and may even trigger a serious flare. When outdoors, wear protective clothing (long sleeves, a big-brimmed hat) and use sunscreen. If there are plans to get pregnant and when looking at options for birth control, please discuss with your doctor.

Updated February 2025 by Pankti Reid, MD, MPH, and reviewed by the American College of Rheumatology Committee on Communications and Marketing.

This information is provided for general education only. Individuals should consult a qualified health care provider for professional medical advice, diagnosis and treatment of a medical or health condition.

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