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Learning About Stevens-Johnson Syndrome

What is Stevens-Johnson syndrome?

Stevens-Johnson syndrome is a rare but serious condition that causes a rash and sores on the body's mucous membranes, which are moist tissues that line the inside of the body.

The condition is most commonly caused by a reaction to a medicine. Other causes include infections. In some people the cause is unknown.

What are the symptoms?

Early symptoms of Stevens-Johnson syndrome may include:

  • Fever.
  • Fatigue, a general feeling of sickness.
  • Itching or burning eyes.
  • Body aches and joint pain.

Within 1 to 3 days, other symptoms of Stevens-Johnson syndrome appear. These symptoms may include:

  • Weeping sores on the mucous membranes of the mouth, nose, genitals, and eyes. When sores occur, it can be painful to eat, drink, or urinate.

  • A skin rash with red spots. The rash may be painful and peel off. It may happen on any part of the body but often begins on the face and chest (trunk).

How is Stevens-Johnson syndrome treated?

Even mild Stevens-Johnson syndrome can get worse quickly and become serious, so it's treated in the hospital. Your doctor can help determine whether a medicine is the cause. If a medicine causes the condition, you will need to stop taking that medicine.

You may receive nutrition and fluids through a tube into the stomach or intestines. Liquid nutrients may also be delivered into the bloodstream through a needle or catheter that is inserted into a vein (intravenous feeding). Your doctor may give you medicines for pain.

You may get treatment for mouth, eye, and skin sores. In some cases, skin grafts are needed. Some people may be treated in a burn unit.

Recovery from Stevens-Johnson syndrome may be slow. It may take weeks or months based on how bad the condition is.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse advice line (811 in most provinces and territories) if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

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