Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis: Recognizing Medication-Related Emergencies

Most people take medications without a second thought. But for a tiny fraction of users, a common drug can trigger a nightmare: skin peeling off, blisters forming in the mouth and eyes, and the body shutting down. This isn’t a rare movie scene-it’s Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN), two sides of the same deadly coin. These aren’t allergies you can treat with antihistamines. They’re medical emergencies that demand immediate hospitalization-and the faster you act, the better your chances of survival.

What Exactly Are SJS and TEN?

Think of SJS and TEN as a spectrum of the same disease, defined by how much of your skin dies and peels off. SJS affects less than 10% of your body surface. TEN? That’s over 30%. Between 10% and 30%? That’s overlap syndrome. The difference isn’t just numbers-it’s survival odds. SJS has a 5% death rate. TEN? It’s over 30%.

It doesn’t start with a rash. It starts with a fever, sore throat, burning eyes, or feeling like you’ve got the flu. Then, within 1 to 3 days, a red or purplish rash appears. It spreads fast. Blisters form. Your skin starts to slough off in sheets. Mucous membranes-your mouth, eyes, throat, genitals-turn raw and ulcerated. You can’t swallow. You can’t open your eyes. Your skin, your body’s shield, is gone.

Doctors diagnose it with a skin biopsy. Under the microscope, they see full-thickness epidermal death-no inflammation, just destruction. It’s not an infection. It’s your own immune system going rogue, triggered by a drug you took days or even weeks ago.

Which Medications Trigger This?

Not every drug causes this. But some are known culprits. If you’re taking any of these, know the signs:

• Allopurinol (used for gout)
• Lamotrigine (for epilepsy and bipolar disorder)
• Carbamazepine and Phenytoin (anti-seizure meds)
• Nevirapine (HIV treatment)
• Piroxicam and Meloxicam (NSAIDs for pain)
• Sulfamethoxazole (antibiotic, often in Bactrim)
• Phenobarbital (sedative and seizure drug)

Here’s the scary part: if you’ve had SJS from one of these, you can’t take any drug in the same class again. Cross-reactivity is real. Survivors of lamotrigine-induced SJS can’t take carbamazepine or phenytoin. A penicillin reaction? Avoid cephalosporins and carbapenems. It’s not a guess-it’s a rule.

And timing matters. Most reactions happen within the first 8 weeks of starting a drug. But sometimes, they show up even after you’ve stopped. That’s why doctors warn: if you get a rash after starting a new med-even if you’ve been on it for weeks-don’t wait. Get checked.

Who’s at Higher Risk?

It’s not random. Certain people are more vulnerable:

• People with HIV or weakened immune systems from chemo
• Those who’ve had a rash from epilepsy meds before
• Anyone allergic to trimethoprim (a common antibiotic component)
• People taking sodium valproate with lamotrigine-this combo triples the risk
• Those with a family history of SJS/TEN-genetics play a role

And here’s something many don’t realize: if you stop lamotrigine for a few days-even because you’re feeling better-and then restart it at the same dose, your risk spikes. Dose titration isn’t optional. It’s life-saving.

What Happens After You’re Hospitalized?

There’s no magic cure. Treatment is about support and stopping the damage. First step: stop the drug-immediately. No exceptions. Then, you’re moved to a burn unit or ICU. Why? Because your skin is gone. You’re at risk of infection, fluid loss, and organ failure.

Doctors clean your wounds, replace fluids, manage pain, and prevent infections. Some hospitals try immunomodulators like IVIG or corticosteroids, but evidence is mixed. The best treatment? Time, care, and stopping the trigger.

Survivors don’t just walk away. The damage lasts. Up to half of those who survive have permanent eye damage: dry eyes, scarring, blurred vision, even blindness. Your nails may fall off. Your scalp may thin. Your mouth becomes so dry and scarred that eating is painful. Women can develop vaginal stenosis. Men can get phimosis. Esophagus narrowing means swallowing becomes a chore.

Recovery takes months. Some need ongoing care from dermatologists, ophthalmologists, and gynecologists or urologists. One study found ocular complications need monitoring for at least a year after recovery.

When to Go to the Emergency Room

If you’re on a high-risk medication and you notice any of these, don’t wait. Don’t call your GP. Don’t wait until morning. Go to A&E now:

• A spreading red or purple rash
• Blisters on your skin
• Sores or ulcers in your mouth, eyes, or genitals
• Flu-like symptoms followed by skin peeling

That’s the NHS’s exact advice. And they’re right. Every hour counts. The sooner the drug is stopped and you’re in a specialized unit, the higher your survival rate.

How to Prevent It

There’s no screening test. No blood test can predict it. But you can reduce your risk:

• Never start a new high-risk drug without knowing the warning signs
• Follow dose titration exactly-especially with lamotrigine
• Don’t restart a drug after stopping it unless your doctor says so
• Avoid new foods or medications during the first 3 months of starting high-risk drugs-rashes from other causes can mask SJS
• If you’ve had SJS before, carry a medical alert card listing every drug you can never take again

And if you’re a caregiver? Watch for changes. A child with a fever and a rash after starting lamotrigine? That’s not just a virus. It could be SJS.

It’s Rare-But Deadly

Yes, SJS/TEN is rare. Less than five cases per million users per week. But rarity doesn’t mean safety. When it hits, it hits hard. And it doesn’t care if you’re young or old, healthy or not. One wrong pill, one missed warning, one delayed trip to the hospital-and everything changes.

Medications save lives. But they can also take them. The key isn’t avoiding all drugs. It’s knowing which ones carry hidden risks-and acting fast when something feels wrong.

If you’re prescribed one of these drugs, read the leaflet. Know the signs. Tell your family. And if you’re ever in doubt? Go to the emergency room. Better safe than sorry.