SJS Dilantin: "I am Lucky to be Alive"

San Diego, CATom G. was prescribed Dilantin after he passed out in a Denny's restaurant and his neurologist concluded he had a "seizure potential." Turns out he never did have a seizure; instead he wound up with SJS dilantin, a serious allergic reaction to the drug.

Tom had several tests for possible seizure activity, from a CAT Scan to MRI and they were all negative. But a few days after taking Dilantin, "I developed a major rash all over my body," says Tom. He went back to the neurologist who told him to stop taking Dilantin immediately. But the rash got worse and turned into blisters. Over the phone, his general physician prescribed medication to stop the itching, but it provided no relief; his doctor had no idea that Tom was suffering from Stevens-Johnson Syndrome.

"A few days later my legs were swollen, painful and bleeding," says Tom. "This time I made an appointment and saw my doctor the next day. He was shocked—he said it was the worst rash he had ever seen and gave me two injections. At that time he diagnosed Stevens Johnson Syndrome.

By the end of the month the rash was almost gone but I had partial numbness on the bottom of my feet. I have a theory about what saved me: I couldn't do my job properly with the regular dose of Dilantin—it seemed to affect my ability to play the piano--so nights that I worked, I would only take half the dose.

On the Dilantin warning label, it says if you see a rash, call your doctor immediately. But here it gets tricky: there are no instructions regarding what to look for; in my case I had 2 or 3 tiny red spots on my chest to start with and it stayed like that for a few days. I didn't sound the alarm at that point until it exploded—full body.

My neurologist later said (he didn't discuss any side effects when first prescribing it) that one possible side effect from Dilantin is a "FATAL rash". I asked him how a rash could be fatal. He told me that it can go inside your body and cause damage to your internal organs. Now I am thinking, if I didn't cheat on the medication—by taking only half doses—I might not be here today.

But I don't think SJS completely left my body because for about six months after that, my rash would start again with any med that I took, even Ibuprofen. My doctor told me that my body was telling me something—I had a severe allergic reaction and it was saying 'no more meds'. I am lucky to be alive.

Next time I went to the drug store, my pharmacist told me what a great medication Dilantin is, as long as it doesn't kill you. Why does my pharmacist know of the danger and still I was left in the dark?

And I've never had a seizure, before or after. I understand from the doctor's standpoint, that he prescribed Dilantin because he had to err on the side of caution, even though it could have cost my life."