SJS Dilantin: Early Diagnosis Crucial

Pensacola, FLThankfully, Linda's doctor told her to stop taking Dilantin just a few days after she started on the drug, otherwise she may have wound up in the burn unit or intensive care unit for weeks or even months with Stevens-Johnson syndrome. Linda got a rash that started around her mouth and spread to her entire body—she was diagnosed with SJS Dilantin.

Linda's doctor prescribed Dilantin because she suffers from temporal lobe seizures and the seizures were becoming more frequent. But Linda says if she had a choice, she would take the seizures any day compared with the horrific pain of Stevens-Johnson syndrome, also known as SJS. " I broke out in this severe rash, it was all over me," says Linda. "My eyes were oozing and I got blisters all over my mouth, even inside my mouth and throat--this has been the most horrible pain imaginable."

"My doctor put me on another antiepileptic drug but since the Dilantin experience I am afraid of taking another medication, even aspirin," she says. As well as the rash, Linda suffered pain in her joints and lost a lot of weight—it happened in May, 20008 but she is still suffering the side effects to this day.

"I found out later I could have died from SJS," she says. "I had this rash for a few months; it cleared up very slowly. To this day I get a similar rash that erupts around my nose and ears and my other body openings; something is still in my system and I think it is Dilantin. My daughter took pictures of my rash and I sent them to the lawyer—I sure was a mess. I didn't know what SJS was, I had never even heard about it until I was diagnosed with this disease."

In 1982, the U.S. Food and Drug Administration approved the anti-convulsant drug Dilantin (also known as phenytoin sodium and Phenytek) which is manufactured by Pfizer, for the treatment of temporal lobe seizures and grand mal seizures; it is also given to patients to prevent seizures following a major brain or spinal surgery. Since its approval, Dilantin has been associated with of Stevens Johnson Syndrome (SJS) and Toxic Epidermal Necrosis Syndrome (TENS)—severe skin conditions that are life-threatening.

As well, the FDA has determined links between Dilantin and SJS when Dilantin is used in conjunction with valproate and oxcarbazepine: the combination of drugs cause toxic levels of phenytoin (Dilantin) to accumulate in the body. Commonly, symptoms occur within a few days after taking Dilantin, as in Linda's case. But sometimes reactions occur weeks later, and the cause of SJS is extremely difficult to determine. Typically, reactions start with headaches, a skin rash, sore throat, blistered lips, itchy or irritated eyes and trouble breathing.

If ingestion of the drug that is potentially causing SJS is not discontinued immediately, the condition could escalate and become life-threatening. LawyersandSettlements recently interviewed a woman whose sister was diagnosed with SJS (caused by a common medication) and was in the intensive care unit for several months—she had a 50 percent chance of recovery. Linda was fortunate, other Dilantin consumers have not stopped taking the drug immediately and their reaction was not diagnosed in time to prevent SJS and TEN—an even deadlier condition.