Toxic epidermal necrolysis

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1Active trials12Specialists8Treatment centers

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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
AcantholysisHP:0100792Excessive salivationHP:0003781
Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

FDA & Trial Timeline

2 events
Oct 2025New Therapeutic Target for Toxic Epidermal Necrolysis (TEN) Using Anti-CD38+ Monoclonal Antibodies.

Hospices Civils de Lyon — PHASE1, PHASE2

TrialNOT YET RECRUITING
Jul 2023Evaluation of the Efficacy and Safety of Methylprednisolone Combined With the JAK Inhibitors in the Treatment of Toxic Epidermal Necrolysis

Peng Zhang — EARLY_PHASE1

TrialRECRUITING

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 →

Clinical Trials

1 recruitingView all trials with filters →

Specialists

12 foundView all specialists →
CC
Chun Bing Chen
Specialist
PI on 1 active trial891 Toxic epidermal necrolysis publications
PM
Pinnita Prabhasawat, MD
Specialist
PI on 3 active trials
EM
Elizabeth J Phillips, MD
Specialist
PI on 1 active trial
JM
Joseph Ciolino, MD
BOSTON, MA
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA 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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Community

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

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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.