Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis: What You Need to Know About Medication-Related Emergencies

When a simple rash turns into a life-threatening emergency, you need to know the signs - fast. Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare but deadly reactions to medications. They don’t just cause discomfort - they destroy skin and mucous membranes, sometimes killing more than one in three people who get TEN. And the worst part? Many people don’t realize what’s happening until it’s too late.

You might start with a fever, a sore throat, or feeling like you’ve got the flu. Then, within a few days, your skin begins to burn, blister, and peel. Your eyes swell shut. Your mouth fills with painful sores. Your skin detaches like a burned sheet. This isn’t an allergic reaction you can treat with antihistamines. This is Stevens-Johnson Syndrome or its more severe cousin, Toxic Epidermal Necrolysis. And if you don’t get to a hospital immediately, the chances of survival drop fast.

What’s the Difference Between SJS and TEN?

Doctors don’t treat SJS and TEN as completely separate diseases. They’re on the same spectrum - a continuum of severity. The key difference? How much of your skin is damaged.

SJS affects less than 10% of your body surface. TEN? That’s over 30%. If your skin damage falls between 10% and 30%, it’s called SJS/TEN overlap. Think of it like burns: a sunburn covers a small area. A third-degree burn over half your body? That’s TEN.

The damage isn’t just surface deep. It’s full-thickness epidermal necrosis - meaning the outer layer of your skin dies and sloughs off. In severe cases, up to 100% of your skin can detach. That’s why patients are often treated in burn units. The same medical team that handles severe burns also manages TEN.

Which Medications Cause These Reactions?

It’s not random. Certain drugs have been linked to SJS and TEN for decades. The most common culprits? Anticonvulsants, antibiotics, and painkillers.

Here are the top offenders:

• Lamotrigine - used for epilepsy and bipolar disorder. Rashes are common with this drug, but most aren’t serious. Still, if you get a rash in the first 8 weeks - or if you stop and restart it without slowly increasing the dose - your risk spikes.
• Allopurinol - taken for gout. One of the most dangerous drugs for triggering TEN, especially in people with the HLA-B*58:01 gene variant.
• Carbamazepine, phenytoin, phenobarbital - other seizure meds. If you’ve had a reaction to one, you’re at risk for reactions to others in this class.
• Sulfamethoxazole - part of the antibiotic Bactrim. Even though it’s widely used, it’s tied to hundreds of SJS cases every year.
• Nevirapine - an HIV drug. High risk in the first few weeks of treatment.
• Oxicam NSAIDs - like meloxicam and piroxicam. These are common painkillers, but they carry a hidden danger.

Here’s the scary part: if you’ve had SJS from one of these drugs, you can’t take any similar ones. Cross-reactivity is real. If lamotrigine caused your reaction, you’re at high risk if you later try carbamazepine or phenytoin. Your immune system remembers.

Who’s at Higher Risk?

Not everyone who takes these drugs gets SJS. But some people are far more vulnerable.

• People with HIV or weakened immune systems - chemotherapy, organ transplants, or autoimmune diseases raise your risk.
• Those with a family history - if a close relative had SJS, you may carry the same genetic risk.
• People taking sodium valproate with lamotrigine - this combo doubles the chance of a dangerous rash.
• Those who’ve had a previous reaction - if you’ve had SJS once, your chance of getting it again is extremely high. Never take the same drug again - or anything chemically similar.

Children are more likely to get SJS than adults, though it can happen at any age. And while the overall risk is low - studies say fewer than five cases per million users per week - the consequences are catastrophic when they happen.

What Happens When You Get It?

It doesn’t start with a rash. It starts with feeling sick.

Day 1-3: Fever, sore throat, fatigue, burning eyes. You think it’s a cold or flu. You take painkillers. You rest.

Day 3-7: A red or purple rash appears - often on your face, chest, or arms. It spreads fast. Blisters form. Your skin feels like it’s on fire. Your lips crack. Your mouth bleeds. Your eyes can’t open. You can’t swallow.

Day 7-14: Skin begins to peel off in sheets. Large areas of your body look like severe burns. Fluid leaks. Infection sets in. Your organs start to fail.

At this point, you’re in a hospital. Maybe the ICU. Maybe the burn unit. You’re hooked up to IV fluids, pain meds, and antibiotics. Your skin is covered in sterile dressings. You can’t eat. You can’t blink. You’re fighting sepsis.

Doctors confirm it with a skin biopsy. Under the microscope, they see dead skin cells with almost no inflammation - the hallmark of SJS/TEN. No other condition looks like this.

How Is It Treated?

There’s no magic cure. Treatment is about survival - not fixing the damage.

Step 1: Stop the drug. Immediately. If you’re not sure which one caused it, they’ll stop everything new you’ve taken in the last 30 days.

Step 2: Get to a specialized unit. Burn units, intensive care, or dermatology units with experience in SJS/TEN. General hospitals aren’t equipped.

Step 3: Supportive care. Fluids. Nutrition through a tube. Pain control. Infection prevention. Wound care. Your skin is gone - they treat it like a burn.

Step 4: Consider immunomodulators. Some hospitals use IVIG (intravenous immunoglobulin) or corticosteroids. But evidence is weak. No treatment has been proven to consistently save lives. That’s why prevention and early recognition are everything.

Time matters. Every hour counts. Studies show mortality drops sharply if you’re treated within 72 hours of the first blister. Delay beyond 5 days? Your chances of dying climb.

Long-Term Damage Is Real

Surviving SJS/TEN doesn’t mean you’re back to normal.

One in two survivors has lasting eye problems: dry eyes, scarring, corneal damage, even blindness. You’ll need regular visits to an ophthalmologist for at least a year - sometimes for life.

Other long-term issues:

• Scarring and skin discoloration
• Nail loss or deformity
• Thinning hair or permanent scalp damage
• Chronic mouth sores, dry mouth, gum disease
• Esophageal narrowing - making swallowing painful or impossible
• Vaginal or urethral scarring in women
• Phimosis in men

Some people recover fully. Others live with chronic pain, vision loss, or difficulty eating. It’s not just a skin condition - it’s a whole-body trauma.

How to Prevent It

Prevention is the only real win here.

• If you’re starting lamotrigine, never increase the dose too fast. Follow your doctor’s schedule exactly.
• Don’t restart lamotrigine after stopping it - even for a few days - without slowly re-building the dose.
• Don’t take new medications or try new foods in the first 3 months of starting a high-risk drug. This reduces confusion between a harmless rash and SJS.
• Know your family history. If someone in your family had SJS, tell your doctor before starting any new medication.
• If you’ve had SJS before, carry a medical alert card. List every drug that caused it - and every drug you must avoid forever.

And if you’re on one of these drugs and you get a rash? Don’t wait. Don’t assume it’s "just an allergy." If you have a fever, blisters, or mouth sores along with it - go to the emergency room now. Say: "I think this might be Stevens-Johnson Syndrome."

What to Do If You Suspect It

Here’s the checklist:

1. Stop the suspected drug immediately.
2. Call emergency services or go to the nearest hospital.
3. Tell them you suspect SJS or TEN - don’t say "rash" or "allergy." Use the exact terms.
4. Bring a list of all medications you’ve taken in the last 30 days.
5. Do NOT apply creams, ointments, or home remedies.

Every minute counts. Hospitals that see SJS/TEN cases regularly have protocols ready. The sooner you get there, the better your odds.