SJS Dilantin: "My Wife's Pain and Suffering was Avoidable"

Essex, ONKevin's wife Jennifer was prescribed Dilantin one year ago to control her epileptic seizures. She had taken the pills for about three weeks when the first signs of SJS Dilantin were noticed. "Jennifer's face swelled up, especially around her mouth, then it progressed into a rash and blisters," says Kevin. By the time she was diagnosed with SJS, Jennifer was blistered from head to toe, both internally and externally, in her mouth and down her throat, but her internal organs were most worrisome.

"When the first symptoms appeared, we just went to a local clinic," says Kevin. " They thought it might have been an allergic reaction to food, soap or clothing, something changed in her everyday life. They did ask what meds she was taking, and of course we told them she was on Dilantin, but they were only concerned with antibiotics. They prescribed an antihistamine but it didn't help. And they said if it got worse, go to the hospital.

The next morning I drove Jennifer to ER. Her diagnosis was still up in the air, nobody knew what could have caused these horrific symptoms. It seemed that the hospital had never dealt with something like this, even though I had taken her to the hospital in Windsor, a major city in Ontario. However, by the time they did some research and checked on the side effects of Dilantin it was pretty much an open and shut case: she was treated for SJS immediately.

When they said SJS was a side effect from Dilantin, it didn't occur to me that the drug company did something wrong. Obviously I was just worried about my wife. But as she started to heal and they said she was going to be OK, I felt frustrated and somewhat angry. How could a drug company allow this to happen without a warning label or any literature for the user? I looked at her prescription and there is no warning. Neither did our doctor talk about any adverse events.

It is one thing to feel a bit nauseated as a side effect from a drug, but this was something else; for a few days I thought I could lose my wife. It was very traumatic.

In a way it was a relief that she was diagnosed with SJS. The first few days were so scary—I didn't think she would ever leave the hospital, I thought she was on her way out. Jennifer was in ICU under care 24/7 for two weeks.

Nature had to take its course and the drug had to release itself—it was a toxin her body had rejected, there is no antidote. She was on a lot of painkillers and bedridden for weeks. She was wrapped up like a mummy in a special material, from her waist up to her neck. Her face was really bad but they had to leave it exposed so she could breathe. There was a 24-hour period where her throat had swollen shut so they were very worried that she might stop breathing. They were prepared to give her a tracheotomy—thank god it didn't get that bad.

I was really frustrated when I researched SJS Dilantin lawsuits and other drugs related to SJS because Canada hasn't recognized the drug as a contributor to SJS. There are so many adverse reports about this drug in the US and Canada so how can our country not recognize the danger? There isn't even a SJS lawyer in this entire country, just in the US…

If we can get involved in a lawsuit, I would like to see the drug company take responsibility because Dilantin has the potential for tremendous damage. They have to change the labeling and Dilantin should have a black box warning. It should be mandatory for your doctor and your pharmacist to be aware of all the side effects, especially life-threatening SJS. It isn't like a little allergic reaction where you are OK the next day. My wife can't even take Tylenol or any medication because she is terrified to take anything, ever again. Dilantin has affected the rest of her life. She will always carry the scars. If she gets emotional or angry, she gets blotches all over her body; she will never be able to go out in the sun; she needs special soaps and lotions.

She tries not to remember much about it, which is a good thing, but we are not going to forget that her pain and suffering was avoidable and the drug company should be responsible."