The Agony of Stevens Johnson Syndrome: "If I Had a Gun I Would Have Shot Myself"

July 31, 2011, 4:00PM. By Jane Mundy

Encino, CAIt's not surprising that Jack had never heard of Stevens-Johnson Syndrome until he wound up in the hospital in horrendous pain and he was diagnosed with SJS. In Jack's case, he had a reaction to the sulfa drug Bactrim and possibly an antibiotic. Not a lot of people know about SJS, but they should—judging from the number of complaints received by LawyersandSettlements, this syndrome isn't as rare as the medical community once believed…

"I'm 86 years old and everyone said I looked about 60 but now I feel 120," says Jack, chuckling. At least SJS didn't affect his sense of humor. "I was in pretty good shape and played tennis until this SJS got hold of me. I'm a veteran—I fought in WWII—but this SJS was far worse than going through the war! So much for my golden years…"

Increasingly, hospitals and SJS attorneys are seeing more cases of SJS, possibly because SJS is not diagnosed and possibly because more medications are being prescribed and promoted. Two common drugs that can result in SJS are over-the-counter (OTC) medications: pain relievers such as Children's Motrin and Advil, while sulfa drugs, like Bactrim, and seizure drugs, like Dilantin, are two prescribed drugs that can result in SJS, as are a number of antibiotic meds.

Back to Jack: Six weeks ago he was prescribed an antibiotic to treat walking pneumonia, but he developed "little pimples" on his stomach that "itched like the devil," so he went to a dermatologist who said they would just go away. "I told him that I was allergic to penicillin so he put me on Bactrim, 800mm twice a day for five days," says Jack.

The meds cured Jack's pneumonia, but something worse was developing. "By the third day the itching was terrible and by the fifth day I went bananas," says Jack. He had welts all over his body that looked like ringworm. "I called my internist, hoping to get rid of the itching and he told me to get into ER immediately. For itching? I couldn't understand…

"An ER doctor took all the normal blood tests and diagnosed Stevens Johnson Syndrome. 'Who and what the heck is Stevens Johnson,' I asked. The doctor said it's an allergic reaction to the wrong drug. As soon as I mentioned Bactrim, she said, 'Oh oh, I have to thank you for coming in today because you might not be here tomorrow.'

"I was admitted right away, hooked up with IV and steroids. From Saturday till Tuesday I had a lot of visitors, including a disease specialist, cardiologist, kidney doctor, the chaplain and a rabbi!

"By late Tuesday night, the itching was horrific and I was scarlet red all over—if I had a gun I would have shot myself. The nurse said I looked like a lollipop. They wrapped me in ice bags and I got through the night—I was given a few more drugs and painkillers and a drug to knock me out. A few days later the itching began to subside but I was still on IV. They discharged me a week later. My blood and kidney count were way off kilter—this SJS affects your entire system and this was really dangerous for me because I do have a kidney problem.

"Since I got out of the hospital I have seen many specialists, all of whom said that Bactrim is very dangerous. I was shocked to find out that you could almost die from a prescribed drug, it was really devastating. And the recovery is a long-term situation; you just can't 'take two aspirins and call me in the morning.' I still have scars and I'm more fatigued than usual and more irritable. It is a horrible thing to have SJS and I don't wish this on anyone.

"As for the future, I'm very skittish about taking any more antibiotics—it's like the plague. I will wait until 30 or 40 years before I take another antibiotic, or any med for that matter!"