Recently, author Phylis Feiner Johnson wrote a warning article for the Epilepsy Foundation of Eastern Pennsylvania highlighting the connection between Dilantin and Stevens Johnson Syndrome (SJS). Dilantin is a commonly prescribed drug to treat seizures including those experienced by epileptics. Johnson has struggled with epilepsy for 20 years and is personally well-versed in a number of drugs related to the disorder. However, when she discovered that Dilantin and SJS had a strong connection, she felt compelled to warn others about the risk.

Dilantin class action lawsuits are growing in numbers every month as victims realize their SJS attack may have been caused by the drug and they were never properly warned about the risk.

“This article is not for those with a weak stomach,” Johnson warns. SJS is “an ugly and sometimes deadly disease.”

Vulnerable patients may be prescribed Dilantin since seizures can impact anyone of any age. There are cases of children as young as two dying of SJS caused by medications. However, according to those behind Dilantin lawsuits, the warnings on the drug simply aren’t adequate.

“Often, signs of SJS begin with flu-like symptoms, followed by a painful red or purplish rash that spreads or blisters, eventually causing the top layer of your skin to die and shed. Treatment focuses on eliminating the underlying cause, controlling symptoms and minimizing complications.” In other words, there is no cure for SJS. Victims are usually treated in burn units and it’s hoped that SJS is caught in time so the symptoms can be treated and the body has the opportunity to heal itself. Just a few hours can be life-changing, but SJS can be misdiagnosed. It’s relatively rare and, at the core, is an allergic reaction.

SJS “requires immediate medical attention,” Johnson says. “Seek emergency medical care if you experience any of the following signs or symptoms: Unexplained widespread skin pain, facial swelling, blisters on your skin and mucous membranes, hives, tongue swelling, a red or purple skin rash that spreads, or shedding of your skin.” Once SJS gets into its most serious stages, the skin sloughs off the body in sheets.

“The exact cause of SJS can’t always be identified. Usually, the condition is an allergic reaction in response to medication, infection or illness. Anticonvulsants like Dilantin and Lamictal can be the culprits which means that complete withdrawal is necessary. Possible complications of SJS include: A secondary skin infection which can potentially become life-threatening, eye problems, damage to internal organs and permanent skin damage.”

Blindness and vision problems are relatively common with SJS survivors because the blisters tend to cluster in wet regions like the eyes, which are sensitive and scarring can lead to vision impairment.

“Because it’s difficult to determine exactly which drug may be causing the problem, your doctor may recommend that you stop taking all nonessential medications. And there are no standard recommendations for treating SJS,” Johnson continues.

Once SJS spreads to at least 30 percent of the body, the condition is reclassified as skin death. Even when the reaction isn’t deadly, it can lead to a lifetime of complications. In severe cases, the survivors can look like they survived a fire.

“When a large area of your body is affected, skin grafting (removing skin from one area of your body and attaching it to another) may be necessary to help you heal. But, this treatment is only rarely required. If the underlying cause of SJS can be eliminated and the skin reaction stopped, your skin may begin to grow again within several days. In severe cases, full recovery may take several months. It’s difficult to prevent an initial attack of SJS because the trigger is unknown. However, if you’ve had SJS once, and your doctor determined that it was caused by medication, be sure to avoid that medication and others in the same class to prevent a future attack.”

However, in the case of those taking Dilantin, even when SJS is correctly diagnosed, physicians may not realize the cause of the attack.

Dilantin Rash Stories

Johnson’s article brought on plenty of empathy. Ruth Brown shares: “I urge everyone with SJS to tell others about what happened. It actually happened to me. When I was six years old, I was diagnosed with epilepsy. I was put on Dilantin. I started out with a rash. It got worse. The rash then broke open and I started losing my skin. My mother took me right away to (a hospital). This was in 1949. They had no treatment for it. They put cold compresses on me to treat me. They thought I was going to die. Somehow, I survived it. It can go into remission and come back later in life. Two years ago, I was diagnosed with it again.”

There are a number of other similar Dilantin rash stories. Dilantin side effects have been insufficiently warned about for decades, according to lawsuits and complaints. Many doctors have never seen SJS in person and, if there aren’t proper warnings from drug manufacturers, they may not have the necessary information to pass on to their patients.