Systemic lupus erythematosus (SLE) is a chronic disease that causes systemic inflammation which affects multiple organs. 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, fatigue, weight loss, blood clots and hair loss. Pregnant women can have miscarriages. SLE can flare during pregnancy and can affect its outcome. Positive antinuclear antibodies (ANA) are present in nearly all lupus patients. Other antibody abnormalities may include + double stranded DNA, anti- smith, and antiphospholipid. Some symptoms may include: rashes, sores, arthritis, lung inflammation, heart inflammation, kidney abnormality, neurologic symptoms, heartburn, stomach pain, poor circulation, and abnormal blood tests. Monitor for renal involvement by looking for high blood pressure, swollen feet and hands, puffiness around eyes, and changes in urination.

What Are Common Treatments?

The treatment goals are to suppress the overactive immune system and ultimately induce remission and prevent permanent organ damage. The medications required depend on the symptoms. Options include hydroxychloroquine (Plaquenil), steroids and immunosuppressants. The FDA has approved belimumab, voclosporin, and anifrolumab to help treat SLE. All medications have possible side effects.

Children with cSLE

Hearing that your child has lupus can be frightening. However, by understanding the disease and working closely with the health care team, you can learn how best to take 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.

Updated February 2023 by Kanika Monga, MD, and reviewed by the American College of Rheumatology Committee on Communications and Marketing. This patient fact sheet 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.