Medicines for Stevens-Johnson syndrome

What it is

Stevens-Johnson syndrome (SJS), and its more severe form toxic epidermal necrolysis (TEN), are rare but very serious conditions in which the skin and the moist linings of the body (mucous membranes — such as the mouth, eyes and genitals) react severely, usually to a medicine, sometimes to an infection. It typically begins with flu-like symptoms (fever, feeling unwell, sore throat, and sore, stinging eyes), followed within days by a spreading, painful rash that blisters, and then the top layer of skin peels away, leaving raw areas — like a severe burn. The mucous membranes are affected too, causing painful sores in the mouth, eyes and genitals. It is a medical emergency because the loss of the skin barrier and the widespread inflammation can lead to serious complications, including infection, fluid loss, and damage to the eyes and other organs. Medicines that can trigger it include certain antibiotics, anti-epileptic drugs, some anti-inflammatory painkillers, and others, usually starting within a few weeks of beginning the drug. Because it is serious and progresses quickly, early recognition and emergency treatment are vital.

How it is treated

Stevens-Johnson syndrome is a medical emergency requiring immediate hospital care, often in a specialist unit (such as a burns or dermatology unit or intensive care), because of how serious and rapidly progressing it is. The first and crucial step is to stop the medicine thought to be responsible without delay, as continuing it worsens the reaction. Treatment is then largely supportive and intensive — similar in principles to caring for someone with severe burns: careful management of the raw skin and wounds, maintaining fluids and nutrition, controlling pain, preventing and treating infection, and protecting and caring for the affected eyes, mouth and other areas (with specialist input, for example from eye specialists, to prevent long-term damage). Some specific treatments to modulate the immune reaction are used in certain cases. Recovery from the skin usually occurs over weeks, but the condition can be life-threatening and can leave long-term effects (particularly to the eyes and skin), so specialist follow-up is important. Crucially, the person must be told exactly which medicine caused it and never take it (or closely related ones) again, and this is clearly recorded and flagged. The overriding message is that a spreading, blistering, painful rash with peeling skin and mouth or eye sores, especially after starting a new medicine, is a medical emergency needing immediate care.