Stevens-Johnson Syndrome (SJS)

Stevens-Johnson syndrome, also called SJS, is a rare but serious problem. Most often, it's a severe reaction to a medicine you've taken. It causes your skin to blister and peel off. It affects your mucus membranes, too. Blisters also form inside your body, making it hard to eat, swallow, even pee.

Getting treated right away helps protect your skin and other organs from lasting damage.

Symptoms

SJS usually starts with a fever and feeling like you have the flu. A few days later, other symptoms appear, including:

  • Painful red or purple skin that looks burned and peels off
  • Blisters on your skin, mouth, nose, and genitals
  • Red, painful, watery eyes

SJS is dangerous. If you have these symptoms, go to the emergency room.

Causes of SJS

More than 100 drugs can cause SJS. Some of the most common are:

The medicines most likely to cause problems in kids are sulfa antibiotics, Tylenol, and drugs that treat seizures, especially carbamazepine (Carbatrol, Tegretol).

If you're going to get SJS, it will most likely happen in the first 2 months you're taking a drug.

An infection, like pneumonia or the herpes virus that causes cold sores, can also trigger SJS. This happens more often with kids than adults.

You're more likely to get SJS if you have:

  • HIV or other problems with your immune system
  • Had SJS before
  • Certain genes you inherit from your parents
  • Radiation treatments

Treatment

You'll be treated for SJS in the hospital by a special team of doctors and nurses. Some people are treated in a burn center or intensive care unit.

Continued

The first thing doctors will do is to stop the medication or treat the infection that made you sick. They'll also try to relieve your symptoms, prevent infections, and support your healing.

Replace fluids and nutrients. Your body needs to stay hydrated, and your skin needs protein to rebuild. You'll probably get fluids from an IV at first, then be fed through a tube that goes into your stomach through your nose.

Wound care . Hospital staff will keep your skin clean. They'll gently remove dead skin and cover bare patches with a special dressing.

Eye care. Your care team will clean your eyes and use special drops and creams to keep them from drying out.

You could be in the hospital from 2 to 4 weeks. It takes time to recover from SJS, and most people do.

Severe cases can be fatal, though, especially during the 3 months after it started. The most common complications tend to be sepsis (an inflammatory reaction in your whole body), trouble breathing because fluid builds up in your lungs, or many organs that stop working. Your chances are better if you're young and otherwise healthy, but you're still at greater risk for up to a year.

Sometimes SJS has effects that will show up years after you heal, including:

Preventing SJS

There's often no way to know how you'll react to certain medicines -- even ones your doctor prescribes. If you're of Asian descent, you may have a gene that raises your risk of SJS. Talk to your doctor about getting tested for this gene before you take carbamazepine.

If you've already had SJS, be careful so you don't get it again.

  • Tell your doctors you've had SJS.
  • Wear a medical alert bracelet.
  • Know the name of the medicine that caused your SJS. Avoid taking it or any drugs like it.
WebMD Medical Reference Reviewed by Debra Jaliman, MD on January 11, 2017

Sources

SOURCES:

Fritsch, P. American Journal of Clinical Dermatology. November-December 2000.

Levi, N. American Journal of Pediatrics. January 2009.

Medscape: "Stevens-Johnson Syndrome Treatment & Management."

National Organization for Rare Diseases (NORD): "Stevens Johnson Syndrome."

Tartarone, A. Therapeutic Drug Monitoring. December 2010.

UpToDate: "Stevens-Johnson syndrome and toxic epidermal necrolysis: Pathogenesis, clinical manifestations, and diagnosis," "Stevens-Johnson syndrome and toxic epidermal necrolysis: Management, prognosis, and long-term sequelae."

U.S. Food and Drug Administration: "FDA Warns of Rare Acetaminophen Risk." August 2013.

U.S. Food and Drug Administration: "Information for Healthcare Professionals: Dangerous or Even Fatal Skin Reactions - Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, and generics)."

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