Stevens-Johnson Syndrome: Causes, Risks, and What to Do If You Suspect It

When your body turns against a medication, the results can be terrifying. Stevens-Johnson Syndrome, a severe immune reaction that causes painful blistering of the skin and mucous membranes. Also known as SJS, it’s not just a rash—it’s a medical emergency that can turn deadly within days. Most cases start with flu-like symptoms, then quickly escalate: your skin begins to burn, your eyes swell shut, your mouth turns raw. It’s often triggered by common drugs—antibiotics like sulfonamides, seizure meds like carbamazepine, or painkillers like ibuprofen and naproxen. But it’s not always the drug itself—it’s your body’s unique response to it.

What makes Stevens-Johnson Syndrome so dangerous is how fast it spreads. One day you have a fever and sore throat; the next, your skin is peeling off in sheets. This isn’t an allergic reaction like a peanut rash—it’s a full-scale immune attack on your own tissues. And it’s not rare enough to ignore: over 1,000 cases are reported in the U.S. each year, mostly in people taking new medications. The FDA MedWatch system exists because patients and doctors need a simple way to report these events. Your report might save someone else’s life—like the woman who developed SJS after taking allopurinol, and whose case helped trigger a black box warning for that drug.

There’s no cure for SJS once it starts—only aggressive hospital care to stop the damage. But you can stop it before it starts. If you’ve just begun a new medication and suddenly feel sick with a burning rash, blistering lips, or red eyes, don’t wait. Get to an ER. Tell them you suspect Stevens-Johnson Syndrome. And if you survive it, report it. Even if your doctor didn’t think it was serious, your experience matters. The more data we collect, the better we get at warning others. Below, you’ll find real stories and guides from people who’ve faced this, from how to recognize early signs to how to file a report that actually makes a difference.