Stevens-Johnson syndrome

My husband is in his early 30's, and was diagnosed with Shingles in Novmber of 2002.  It was located on his head and did get into his left eye.  After the initial outbreak, he was still suffering from post-herpetic neuralgia.  A few weeks ago, he was given Tegretol in an effort to get him off Percocet, which he's been on since November.

After about 2 weeks of the Tegretol, the dose increased to 1000mg per day.  The very next day after the first 1000mg day, he awoke with itchy ears.  The day after that, we saw the beginning of a rash from the elbow to the wrist, and from the knee to the ankle.  His doctor took a quick look, decided it was a contact rash, and sent him home, where he continued to take the Tegretol for 2 more days.  During the next few days, the rash continued to spread, first up his arms and legs, and then to his trunk.  5 days ago, it was finally determined that this rash could have been caused by the Tegretol, so it was elminated from his treatment.

The rash kept creeping up his neck over the next two days, only now it was associated with swelling.  This morning, after a couple of trips to the doctor this week, he was finally admitted to the hospital under a diagnosis of Stevens-Johnson syndrome.  The rash now covers just about his entire body, including his palms and the soles of his feet.

I've done some research on SJS, and have some questions regarding this diagnosis.  What I've read says that SJS usually starts in the facial area.  Could he be misdiagnosed?  Or is it possible that the ear itching was the beginning of it?

Secondly, if this is, in fact, the correct diagnosis, what type of facility should he be in?  We are in a small military community overseas, with no dermatologist and, as far as we can tell, no one who's ever actually seen a case of SJS.  There is no ICU in our hospital, although there is one located in a Japanese hospital about 30 kms away.  There is a possibility of aeromedical evacuation to a more appropriate facility, but the doctors are not offering that at this time.  I will push for it if I feel it's necessary, but I am not sure if it is necessary yet.

Thank you.

[Alan Rockoff, MD]

There isn't much to do for Stevens-Johnson excpet offer supportive care (fluids, anti-fever medication) while this severe form of drug reaction takes its course.  An exception would be if there is severe exfoliation (skin peeling off in sheets.)  If there is, then consideration needs to be given to management in a burn unit.

Your husband's doctors should have the ability to communicate with medical facilities stateside both by e-amiling photographs and obtaining telephone consultaion about diagnosis and management.

I would advise pushing for both.

Best.

Dr. Rockoff