Robert Hsiung, MD, who prefers to go by the name “Dr. Bob,” recently  unveiled his own experience, both as a physician and as a patient, with Lamictal Stevens Johnson Syndrome (SJS). Designed to treat both seizures and mood disorders, a number of people rely on Lamictal on a daily basis, but are unaware that the drug can cause the painful and life-threatening skin reaction, SJS.

“What follows is an account of my own case of Stevens Johnson, which I am slowly recovering from after over six weeks of misery,” Dr. Bob shares in an online posting. Dr. Bob hopes that his warning saves at least one life.

SJS is a severe skin rash which can turn deadly overnight. The symptoms include the body being burned from the inside out, with a seemingly harmless rash giving way to blisters in just hours. Victims are usually treated in burn units, but there’s no treatment for SJS— only the symptoms can be treated.

Dr. Bob says he didn’t have a “serious” case of SJS because it never turned in to toxic epidermal necrolysis (TEN), which is skin death and happens when SJS covers more than 30 percent of the body.

“I can’t even imagine a ‘serious’ case,” he says, after considering how painful his experience was. He was on Lamictal for over a year and a half before any SJS symptoms popped up.

“I started noticing an intense itching at 125 (mg) but didn’t ascribe it to Lam. After all, we’re warned about a ‘rash’ and not much else, and I thought that maybe having nine cats was finally getting to me. At 150mg, my skin and inner ears started feeling inflamed, but still no rash.”

When he scaled back to 100mg of Lamictal, the itching subsided.

“I again attempted to slowly increase, but the intense itching started again. I also had a few twinges of what I thought was my old nemesis of many years back—yeast infections!”

Not even this SJS victim, a doctor, realized what was happening until it was too late. “Regular” SJS victims don’t stand a chance, he says.

“I’ve been on every antidepressant out there, and after 25 years with every one ‘pooping’ on me and not getting better, I decided enough was enough… My last Lamictal was January 31. It was very difficult during the weaning off, but I’m very glad I did it and for the first time in so long began to feel normal.”

That’s all great news for the doctor, but he still didn’t realize just what was around the corner.

“Here’s where it gets interesting,” he notes. “I got the rash and much worse, but not while I was on Lam, but supposedly from another drug. Many meds can cause an allergic skin reaction, the mild form called erythema multiform minor, the serious form which also affects mucous membranes is erythema multiform major, or Stevens Johnson Syndrome.”

Wrong diagnoses are unfortunately common with SJS.

“Even though I had stopped taking Lam over two months prior, and even though this new drug was also known to cause SJS in rare cases, I’m sure it was the Lam that primed me for it. Why? Read on, but be prepared to feel distress, especially if you’re taking Lam, but also Depakote, Dilantin, Tegretol, Ibuprofen, narcotics, sulfas, or any of the others that singly, but especially if combined, are causing more and more cases of this thing.”

SJS often strikes quickly, and often when a patient first begins Lamictal, but it can linger in the body and strike later when irritated. SJS doesn’t follow any timelines or rules, and anyone can become the next Lamictal victim.

A Case for Delayed SJS

“The first week on DMPS, I got the same intense itching as on Lam. I also noticed the pesky vaginitis/yeast infection and some slight blistering in my mouth but didn’t think it was the drug. Never had a hemorrhoid in my life either, but dang, there it suddenly was! Three weeks later, a rash started appearing but I had the God-sent grace to stop taking the drug, go to urgent care where they told me to ‘watch and wait’ because there is nothing they can do for it except hope it doesn’t get worse. The rash continued to spread for the next two weeks until my torso, arms and legs were covered with what looked and felt like shingles, my mucous membranes were swollen.”

Blisters appeared everywhere, collecting in wet regions. “I was in the emergency room for over 14 hours.”

However, “I was not admitted because it was not yet at the most serious stage (TENS) and in the words of my ER doc, ‘There are resistant staph infections in hospitals and you do not want to be here with a skin barrier condition unless there’s no choice.’ She said Stevens Johnson was formerly a very rare condition, but they’re seeing more of it.”

Life support in a burn trauma unit is the only shot a SJS victim has to survive. “So why do I think Lam had anything to do with it…I knew something was going on with the itches and such, but didn’t know enough back then.

From my research, I’ve since learned that there can be an early prodromal stage in SJS where an inflammatory condition is starting, but a rash doesn’t necessarily show up until later.”