Has SJS Come Out of the Closet?

April 6, 2010, 8:00AM. By Jane Mundy

Frankfurt, KYLast November Steve was hospitalized for severe depression and a suicide attempt. During his short stay, Steve developed a rash and skin lesions but thought it was just a reaction to the sheets. Nobody saw the first signs of Stevens Johnson Syndrome. "The hospital doctors let me go to a nearby clinic and I was diagnosed with contact dermatitits," says Steve. He was prescribed steroids, but his condition rapidly deteriorated into full-blown SJS.

The hospital doctors gave Steve Prozac and Tegretol, the latter drug used to treat epilepsy (similar to dilantin, which also causes SJS), bipolar disorder and neuropathic pain. "I was prescribed two 10 mg pills of Tegretol per day, and then it was increased to three pills per day. Just a few days later I started breaking out in skin lesions. The hospital discharged me early because they didn't want to deal with this rash… maybe they thought it was contagious. I went home from the clinic on Wednesday but the lesions got worse.

"I woke up on Friday morning covered with lesions on my lips, eyes, in my nose and in my mouth—it was all over my body, even the soles of my feet, the palms of my hands, my genitals. I still didn't know what it was and went to the local ER. They didn't have a clue either. The ER doctor was calling other doctors and hospitals, including his buddies at the Lexington Medical Center. Three hours later he diagnosed SJS caused by Tegritol. He didn't want to treat it so they sent me to Lexington by ambulance. The doctors took one look at me and said, 'Yep, that's bad.' I was there, in agony, for six days.

"They treated me with more steroids and it slowly got better but my lips were swollen and bleeding, my eyes were shut and the lesions were throughout my mouth. And the steroids kept me awake at night so I didn't find any solace in sleep.

"They told me never ever to take Tegritol again. In fact I wear a bracelet that says as much. I'm still taking Prozac but if I am prescribed anything else it will have to pass a lot of tests. After reading up on SJS I can see that just about anything can trigger it. And SJS isn't that rare—I know a four-year-old child who almost died from SJS after taking Childrens' Motrin. It seems much more common now; maybe SJS came out of the closet…

"I was angry when I found out that I had SJS. I received this drug from the hospital and it is outrageous that I wasn't warned or tested somehow. When I Google this drug, the first thing I see is the SJS warning. Now I'm wondering what to do. I want to speak with an attorney first, before I call the doctors and raise Cain.

"I still have scars from SJS, they aren't quick in leaving. There is mostly scarring on my trunk, back and legs. I was considering my sight yesterday—I have a lot of spots in my vision, and not those common floating 'squigglies.' My tongue is also affected; I have a difficult time forming some words. And one other thought: I might also have chronic fatigue syndrome. Every day around 4 pm I crash and just want to sleep for a few hours. I was never like this before. I haven't gone back to work yet. I really don't know if I can handle a work schedule; I really don't feel up to it just yet.

"I just received a questionnaire from your attorney who has a SJS litigation department. Tegritol is pre-printed on the form so they are evidently pursuing this drug."

Tegretol, also known as Carbamazezine, is made by Novartis. The Tegretol manufacturer has issued SJS/TEN warnings, estimating that this serious and sometimes fatal disease occurs in one to six per 10,000 users in countries with mainly Caucasian populations, but the risk can increase tenfold in Asian countries.