Diagnosis

Tests and procedures used to diagnose Stevens-Johnson syndrome include:

  • Physical exam. Doctors often can identify Stevens-Johnson syndrome based on your medical history and a physical exam.
  • Skin biopsy. To confirm the diagnosis, and rule out other possible causes, your doctor may remove a sample of skin for laboratory testing (biopsy).
  • Culture. Skin or oral culture or culture from other areas may be taken to confirm or rule out infection.
  • Imaging. Depending on your symptoms, your doctor may have you undergo a chest X-ray to check for pneumonia.
  • Blood tests. These are used to confirm infection or other possible causes.

Treatment

Stevens-Johnson syndrome requires hospitalization, often in an intensive care unit or a burn unit.

Stopping nonessential medications

The first and most important step in treating Stevens-Johnson syndrome is to discontinue any medications that may be causing it. Because it's difficult to determine exactly which drug may be causing the problem, your doctor may recommend that you stop taking all nonessential medications.

Supportive care

Supportive care you're likely to receive while hospitalized includes:

  • Fluid replacement and nutrition. Because skin loss can result in significant loss of fluid from your body, replacing fluids is an important part of treatment. You may receive fluids and nutrients through a tube placed through your nose and advanced into your stomach (nasogastric tube).
  • Wound care. Cool, wet compresses will help soothe blisters while they heal. Your health care team may gently remove any dead skin and place petroleum jelly (Vaseline) or a medicated dressing over the affected areas.
  • Eye care. You may also need care from an eye specialist (ophthalmologist).

Medications

Medications used in the treatment of Stevens-Johnson syndrome include:

  • Pain medication to reduce discomfort.
  • Medication to reduce inflammation of the eyes and mucous membranes (topical steroids).
  • Antibiotics to control infection, when needed.
  • Depending on the severity, other systemic medications can be considered, including oral steroids, immune globulin and other immune-related treatments. These treatments remain controversial but may be used on a case-by-case basis depending on the cause and other health issues of the patient.

If the underlying cause of Stevens-Johnson syndrome can be eliminated and the skin reaction stopped, new skin may begin to grow over the affected area within several days. In severe cases, full recovery may take several months.

Lifestyle and home remedies

If you have had Stevens-Johnson syndrome, be sure to:

  • Know what caused your reaction. If your condition was caused by a medication, learn its name and that of closely related medications.
  • Inform your health care providers. Tell all your health care providers that you have a history of Stevens-Johnson syndrome. If the reaction was caused by a medication, tell them which one.
  • Wear a medical information bracelet or necklace. Have information about your condition and what caused it inscribed on a medical information bracelet or necklace. Always wear it.

Preparing for your appointment

Stevens-Johnson syndrome is an emergency medical condition. If you have signs and symptoms, call 911 or emergency medical help, or go to an emergency room immediately.

If you have time before you go:

  • Put in a plastic bag all the medications you've taken in the last three weeks, including prescription and over-the-counter (nonprescription) drugs. Take the bag with you, as it may help the doctor figure out what triggered your condition.
  • Ask a family member or a friend to come along, if he or she is available immediately. You may want to share relevant health information about yourself with him or her, so this person can help you when you talk with your doctor.

Questions your doctor may ask include:

  • Have you had a flu-like illness recently?
  • What other medical conditions do you have?
  • What medications have you taken in the last three weeks?

While you're in the hospital, you'll likely have questions for your doctor. It might help to keep a list of questions you have, such as:

  • What caused my condition?
  • How do I keep from having this reaction again?
  • What restrictions do I need to follow?
  • I have other medical conditions. How do I manage them together?
  • How long will it take my skin to heal?
  • Am I likely to have any permanent damage?