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Stevens–Johnson syndrome / toxic epidermal necrolysis

Necrolysis epidermalis toxica (syndroma Stevens–Johnson) · Stevensův–Johnsonův syndrom / toxická epidermální nekrolýza

What it is

A rare, usually drug-triggered immune reaction in which skin and mucous membranes blister and peel; over 30% detachment is TEN, fatal in about a quarter to a third.

Symptoms & signs

  • Fever and flu-like start
  • painful dusky red spots that spread
  • blisters and sheets of peeling skin
  • raw mouth, eyes and genitals
  • eye scarring later

🚩 Get help if…

  • call 112 / 911 now Painful red or purple rash spreading fast, with blisters or peeling skin
  • call 112 / 911 now Sores in the mouth, eyes or genitals with a fever
  • call 112 / 911 now Skin that slides off with a light touch
  • see a doctor soon Fever and sore eyes in the weeks after starting a new medicine

Where it strikes

Medical treatment

  • Stop the culprit drug at once (allopurinol, carbamazepine, lamotrigine, sulfonamides, nevirapine)
  • burns-unit or intensive care; SCORTEN score
  • eye care by an ophthalmologist to prevent blindness
  • Ciclosporin — small studies suggest fewer deaths mixed evidence
  • IVIG or steroids — conflicting results mixed evidence
  • HLA-B*15:02 test before carbamazepine in Asian ancestry; HLA-B*58:01 before allopurinol

Natural & lifestyle

  • Never take the culprit drug again; carry an alert card
  • nutrition and wound care

Emerging & experimental

  • Etanercept — a small trial against steroids
  • JAK inhibitors
  • amniotic membrane grafts for the eyes

Alternative, off-label & anecdotal

Approaches used outside the guidelines, with what their supporters report and what testing has found so far.

  • Honey dressings — untested here anecdotal / traditional
  • Herbal remedies — can themselves trigger the reaction anecdotal / traditional

ICD codes