A San Diego man who identifies himself only as “Tom G.” on an online forum for SJS survivors says that he’s lucky to be alive after he reportedly developed Stevens Johnson Syndrome (SJS) from Dilantin, an anti-seizure medication.
After he passed out at a Denny’s restaurant, Tom went to see a neurologist who said that he’d had a seizure and, even though this was a new event for Tom, his doctor said he had “seizure potential.” He was prescribed Dilantin, a very popular anti-seizure medication, in order to avoid such episodes in the future. It was lucky that Tom had the episode in a relatively safe place—others who have seizures may do so while driving or in another compromised position, putting their safety and the safety of those around them at risk.
However, it turns out that Tom never had a seizure. Sometimes people get light-headed for a number of reasons and it’s no cause for alarm. When he went to see his neurologist, a series of tests were given ranging from an MRI to a CAT scan. All were negative for seizures, but his doctor reportedly wanted to put Tom on Dilantin “just in case.”
What Tom and his doctor didn’t know at the time was that Dilantin is linked to Stevens Johnson Syndrome (SJS), which is a painful and potentially deadly condition. At its core, it’s “just” a skin allergy but that description seriously downplays what happens with SJS. It starts with a rash, quickly worsens to blisters (especially around moist regions like the eyes and mouth) and then the skin starts to peel away from the body in large patches. Once SJS covers at least 30 percent of the body, the diagnosis changes to Toxic Epidermal Necrolysis (TEN) or skin death. At this point, few people survive without long-term effects.
“I developed a major rash all over my body” just days after starting Dilantin, Tom says. His doctor told him to stop taking the drug immediately, but by now it was too late. The Dilantin rash had started to spread and blister. He was given medication to stop the itching, but it didn’t help.
“A few days later my legs were swollen, painful and bleeding. 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.”
In a sense, Tom is lucky. Many doctors have never seen SJS in person and are unfamiliar with it. A misdiagnosis can cost a person their life. Many Dilantin SJS sufferers first go to the emergency room and are dismissed as having a rash. However, even a few hours without treatment can turn SJS into lethal TEN. Even worse, there’s no cure for SJS. Most SJS victims are treated in burn units, and the symptoms can be addressed in the hopes that the body and skin will begin to heal itself. Many Dilantin lawsuits claim the same thing: the drug is unreasonably dangerous and the drug makers didn’t adequately warn about the risks of SJS on the labels. If SJS was clearly listed, at the very least patients and doctors would have a clue about what’s happening when a person seemingly breaks out into a rash.
In Tom’s case, the SJS rash went away after about a month. However, “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.”
Tom thinks that it’s just the fact that he cut his Dilantin prescription in half that saved him. There are cases where people are hospitalized for weeks with SJS and don’t get any better. It’s an incredibly painful experience since the body has to be kept clean and sterile, and since the skin is literally sloughing off of the body, washing is excruciating. Tom may qualify to join a growing Dilantin class action lawsuit to get compensation for his pain, suffering and medical bills.
What Warning?
Tom notes that on the label for Dilantin, it does say to call your doctor if you see a rash. “But here’s where it gets tricky: There are no instructions regarding what to look for,” he says. “In my case, I had two or three 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.” His neurologist said at a later date that a possible Dilantin side effect is a “fatal rash.”
When Tom asked how a rash could possibly be fatal, his doctor explained that it can move inside the body to harm the organs. However, Tom also says that he doesn’t think he was completely SJS-free for another six months.
“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’m lucky to be alive. The 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?”
In general, Dilantin Stevens Johnson Syndrome lawsuits are filed individually by each plaintiff and are not class actions.
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If you or a loved one were diagnosed with Stevens Johnson Syndrome (SJS) or toxic epidermal necrolysis (TEN) after taking a prescribed or over-the-counter medication, like Dilantin, you may be eligible to take legal action against the drug’s manufacturer. Filing an SJS lawsuit or class action lawsuit may help you obtain compensation for medical bills, pain and suffering, and other damages. Obtain a free and confidential review of your case by filling out the form below.
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My daughter was on this med for her siezures, but we never linked the big patches and swelling on her legs to dilentin. We took her to a dermatologist, but by that time I took her off all meds AMA. her seizures went from 2 to 3 a week to 1 every 3 to 4 months. The patches are going away now, about a year and half later.