SJS from Ibuprofen and Bactrim

December 10, 2009, 3:00PM. By Jane Mundy

Yucca Valley, CAPat was prescribed Bactrim for a staph infection—the infection cleared up but about one week later she developed a rash. "It was so itchy and painful that I took Ibuprofen, but the rash got worse," she says. Pat went to urgent care and was told to take Benedryl. One week later she wound up in the hospital, diagnosed with Stevens Johnson Syndrome (SJS).

"The rash started on my chest then spread all over my body," says Pat. "Nothing could ease the itch and pain—I couldn't even walk because my feet were all swollen and blistered.

"By the time I got to the hospital my skin was burnt everywhere, even in my mouth. I had big scabs that were so painful. The doctors didn't know what was wrong for the longest time but finally a doctor diagnosed me with SJS. He gave me a shot of Benedryl and prednisone. He said I had a mild case because most people with SJS wind up in the burn center.

"My friend googled SJS and found out that almost half of SJS victims don't recover. I guess I was one of the lucky ones.

"As I got better I peeled skin off my feet—like pulling off a glove. And I lost my sense of taste and touch. I was born blind so touch is so important. Tough skin had to come off my fingers and palms of my hands; it eventually sloughed off but took a long time. I couldn't even taste cookies, at least for several weeks. I was miserable.

"I found out that if you take ibuprofen for pain, SJS gets worse. How was I supposed to know that?

"I also heard that SJS can cause blindness—I can't say that about me! But of course, being blind made it worse. I was fine being blind because I have adjusted and have been blind all my life. But last May I was mopping up some water and fell. Since that time I haven't been able to walk without holding on to a wall. I don't know if SJS affects your balance; the doctors can't figure out this balance problem. I do know that I haven't been the same since I had SJS.

"Now I am going to therapy, and I'm hopeful it will help with my balance. After this happened, I need someone here 24/7. I was a healthy, normal person before this happened. I used to walk two miles every day, but since I had SJS, I can't even walk around the block.

"I was so mad when I found out that drugs like Bactrim and Ibuprofen can cause SJS. I am mad at the makers of these drugs. I will never take these drugs again. I was sick last winter with a high fever. They wanted to give me a shot and I said, 'Tell me what it is first, because if it is related to Ibuprofen or Bactrim, I don't want it.' I also went through depression: it is an awful thing when your whole lifestyle changes, that's what SJS can do."