Overview
Toxic epidermal necrolysis, often called TEN, is a rare but very serious skin reaction that is almost always triggered by medications. It causes widespread death and shedding of the top layer of skin, similar to a severe burn. TEN is considered a medical emergency and requires immediate hospital care, usually in a burn unit or intensive care unit. The condition typically begins one to three weeks after starting a new medication. Early signs include fever, flu-like symptoms, and a painful rash that quickly spreads across the body. The skin develops blisters and begins to peel off in large sheets, leaving raw, exposed areas underneath. The eyes, mouth, throat, and genital areas are also commonly affected. Because the skin acts as the body's protective barrier, losing large areas of it puts patients at serious risk for infection, dehydration, and organ failure. TEN is defined as skin detachment affecting more than 30 percent of the body surface area. When less than 10 percent is affected, it is called Stevens-Johnson syndrome (SJS), and between 10 and 30 percent is called SJS-TEN overlap. The most common medications that trigger TEN include certain antibiotics (like sulfonamides), anti-seizure drugs (like carbamazepine, phenytoin, and lamotrigine), allopurinol (used for gout), and some nonsteroidal anti-inflammatory drugs. Treatment focuses on stopping the offending drug immediately, providing intensive supportive care including wound management, fluid replacement, pain control, and preventing infections. Some doctors may use immunosuppressive treatments, though their benefit is still debated.
Also known as:
Key symptoms:
High feverWidespread painful skin rashLarge blisters on the skinSkin peeling off in sheetsRaw, exposed skin resembling a burnPainful sores in the mouth and throatEye redness, pain, and sensitivity to lightDifficulty swallowingGenital sores and painFlu-like body aches before the rash appearsSevere dehydrationBreathing difficultiesPainful urinationExtreme fatigue and weaknessSensitivity or burning feeling of the skin
Clinical phenotype terms (39)— hover any for plain English
Multifactorial
Caused by a mix of several genes and environmental factors
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
2 eventsHospices Civils de Lyon — PHASE1, PHASE2
Peng Zhang — EARLY_PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Toxic epidermal necrolysis.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Toxic epidermal necrolysis.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Which specific medication caused my TEN, and what related drugs should I also avoid for life?,Should I get HLA genetic testing to understand my risk with other medications?,What long-term complications should I watch for, especially with my eyes?,Should my family members be tested for the same genetic risk factors before taking certain medications?,How can I safely take medications in the future, and should I see a pharmacologist?,What mental health support is available to help me cope with this experience?,How do I get a medical alert bracelet or card, and what information should it include?
Common questions about Toxic epidermal necrolysis
What is Toxic epidermal necrolysis?
Toxic epidermal necrolysis, often called TEN, is a rare but very serious skin reaction that is almost always triggered by medications. It causes widespread death and shedding of the top layer of skin, similar to a severe burn. TEN is considered a medical emergency and requires immediate hospital care, usually in a burn unit or intensive care unit. The condition typically begins one to three weeks after starting a new medication. Early signs include fever, flu-like symptoms, and a painful rash that quickly spreads across the body. The skin develops blisters and begins to peel off in large shee
How is Toxic epidermal necrolysis inherited?
Toxic epidermal necrolysis follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Toxic epidermal necrolysis?
Yes — 1 recruiting clinical trial is currently listed for Toxic epidermal necrolysis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Toxic epidermal necrolysis?
12 specialists and care centers treating Toxic epidermal necrolysis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.