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

Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) aren’t just rare skin rashes. They’re medication-related emergencies that can turn deadly in days. You might start with a fever, sore throat, or fatigue-like a bad cold. Then, within 1 to 3 days, your skin begins to burn, blister, and peel. Mucous membranes in your mouth, eyes, and genitals break down. What began as a mild reaction can become a full-body crisis. And it all happens fast. If you’re taking certain medications, you need to know the warning signs-because waiting even one day can change your outcome.

What Exactly Is SJS and TEN?

SJS and TEN are two ends of the same dangerous spectrum. They’re both caused by severe immune reactions to drugs, leading to the death of large areas of skin. The difference? How much of your skin is affected.

If less than 10% of your body surface area is involved, it’s called Stevens-Johnson Syndrome. If more than 30% peels off, it’s Toxic Epidermal Necrolysis. Between 10% and 30%? That’s overlap syndrome. In the worst TEN cases, up to 100% of the skin can detach-like a severe burn, but without heat. The skin doesn’t just itch or flake. It dies, then sloughs away in sheets. This isn’t a rash you can treat with cream. It’s a medical disaster.

The condition starts with flu-like symptoms: fever, chills, cough, body aches. Then comes the rash-red or purplish patches that spread quickly. Blisters form. The top layer of skin separates from the layers beneath. It’s painful. It’s terrifying. And it’s often mistaken for a common allergic reaction-until it’s too late.

Which Medications Trigger These Reactions?

Not every drug causes SJS or TEN. But some carry a known, documented risk. The most dangerous include:

• Allopurinol (used for gout)
• Lamotrigine (for epilepsy and bipolar disorder)
• Carbamazepine and phenytoin (anti-seizure meds)
• Nevirapine (an HIV drug)
• Penicillin and sulfonamides (like sulfamethoxazole)
• Oxicam NSAIDs (meloxicam, piroxicam)
• Phenobarbital

Here’s the catch: you don’t need to be on the drug for long. Reactions can happen within the first 8 weeks-sometimes even after you’ve stopped taking it. For lamotrigine, the risk spikes if you increase the dose too fast, or if you stop it suddenly and restart without slowly building back up.

And it’s not just the exact drug. If you’ve had a reaction to carbamazepine, you’re at high risk if you later take phenytoin or lamotrigine. These drugs are chemically similar. Your immune system remembers. Survivors must avoid not just the original drug, but entire classes of related medications. This is why doctors ask about past rashes before prescribing.

Who’s at Higher Risk?

SJS and TEN can strike anyone-but some people are more vulnerable:

• People with HIV or weakened immune systems (from chemo or other conditions)
• Those who’ve had a previous skin reaction to anticonvulsants
• People allergic to trimethoprim (a common antibiotic)
• Those taking sodium valproate along with lamotrigine (a dangerous combo)
• People with a family history of SJS/TEN-suggesting genetic links

Genetics play a role. Certain gene variants, like HLA-B*15:02, are strongly tied to carbamazepine-induced SJS in people of Asian descent. Testing for this gene is now standard in some countries before prescribing the drug. If you’re from Southeast Asia and your doctor prescribes carbamazepine, ask if genetic screening is available.

Children are more likely to get SJS than adults-but the condition is still rare overall. Even if you’re on a high-risk drug, your chance of developing SJS/TEN is less than 5 in a million per week. But when it happens, it’s life-altering.

What Happens in the Hospital?

If you suspect SJS or TEN, go to the ER immediately. There’s no home remedy. No over-the-counter fix. Delaying care increases your risk of death.

Once you arrive, the first step is stopping the suspected drug. That’s non-negotiable. Even if you’re not sure which one caused it, doctors will stop all non-essential medications.

You’ll be moved to a burn unit or intensive care unit. Why? Because your skin is gone. Your body is exposed. You lose fluids, heat, and protection from infection. Treatment focuses on:

• Fluid replacement (IV fluids to prevent shock)
• Wound care (special dressings, sterile environments)
• Pain management (often requiring strong opioids)
• Preventing infections (antibiotics if needed, but only if infection is confirmed)
• Eye care (daily saline rinses, ophthalmologist visits)
• Nutritional support (often through feeding tubes, since mouth sores make eating impossible)

There’s no magic drug. Steroids and IVIG (intravenous immune globulin) are sometimes used, but studies show mixed results. The best treatment? Early recognition and expert supportive care.

Long-Term Damage Is Common

Surviving SJS or TEN doesn’t mean you’re back to normal. In fact, most survivors face lasting problems.

Up to 50% of people develop serious eye complications: dry eyes, scarring, blurred vision, even blindness. That’s why ophthalmologists see these patients for at least a year after recovery. Some need corneal transplants.

Other long-term issues include:

• Scarring and discoloration of the skin
• Nail loss or deformities (nails often grow back, but slowly)
• Thinning hair or permanent hair loss
• Chronic mouth sores, dry mouth, gum disease
• Esophageal strictures (narrowing that makes swallowing hard)
• For women: vaginal scarring and stenosis (narrowing)
• For men: phimosis (tight foreskin)

Some people develop chronic pain, fatigue, or depression after surviving. The trauma of losing skin, spending weeks in isolation, and facing a long recovery changes you.

And yes-death is possible. Mortality rates: 5% for SJS, up to 30% for TEN. The biggest killers? Sepsis, organ failure, and blood clots.

How to Prevent It

You can’t always predict SJS or TEN-but you can reduce your risk.

• If you’re prescribed lamotrigine, carbamazepine, or allopurinol: start low, go slow. Never rush the dose increase.
• Don’t start new medications or supplements during the first 8 weeks of high-risk drugs.
• Know your family history. If a close relative had SJS, tell your doctor.
• Pay attention to your skin. A new rash with blisters or peeling? Go to the ER-not your GP.
• Keep a list of all medications you’ve taken, especially if you’ve had a rash before.
• If you’ve had SJS/TEN before, carry a medical alert card. Never take the same drug-or anything similar-again.

Doctors need to know your history. If you’ve had a rash with one anticonvulsant, don’t assume the next one is safe. Cross-reactivity is real. And if you’re told, "It’s probably just a harmless rash," trust your gut. If it’s spreading, painful, or you’re feeling unwell-get help now.

What to Do If You Think You Have It

Don’t wait. Don’t call your pharmacy. Don’t Google it. If you’re on a high-risk drug and you develop:

• A spreading red or purple rash
• Blisters on skin or inside your mouth
• Peeling skin
• Fever, sore throat, or burning eyes

-go to the emergency room immediately. Say: "I think I might have Stevens-Johnson Syndrome." That phrase gets attention. It triggers the right protocol.

Bring your medication list. If possible, bring the pill bottle. Time matters. The sooner the drug is stopped, the better your chance of survival.

Final Thoughts

SJS and TEN are rare-but when they happen, they’re brutal. The drugs that cause them are often necessary. But they come with hidden risks. If you’re prescribed one of these medications, don’t panic. But do pay attention. Know the signs. Speak up. Your skin is your body’s first line of defense. When it starts to fail, it’s not a nuisance-it’s a cry for help.