A growing number of people are documenting experiences with topical steroid withdrawal (TSW) on social media using the hashtag #TSW, with videos on TikTok viewed more than a billion times. TSW, also known as red skin syndrome, is under-researched, and some general practitioners and dermatologists struggle to diagnose or treat it. Patients often report frustrating encounters with healthcare providers.
Bethany Gamble described being told by doctors it was just eczema and offered more steroids, which she felt was gaslighting. Medical opinion on TSW remains divided: some experts believe it is a debilitating reaction to steroid creams, while others think it is a severe flare-up of eczema or other skin conditions and are not convinced it exists. Research efforts are underway to address these gaps.
We're seeing patterns in TSW that cannot be explained by what is known about eczema. Symptoms like thickening and laxity of the skin, so-called 'elephant skin', extreme shedding and sharply defined areas of redness next to normal skin.
Professor Sara Brown secured funding from the National Eczema Society to research TSW after being moved by patient symptoms and social media posts. Professor Sara Brown described patterns in TSW that cannot be explained by known eczema knowledge, including symptoms like 'elephant skin', extreme shedding, and sharply defined redness. Professor Sara Brown and Dr Alice Burleigh have recruited hundreds of people across the UK for a study analyzing symptoms, saliva samples, and skin biopsies to understand why some get TSW and others do not.
Henry Jones is participating in the TSW research and describes himself as a 'TSW warrior'. Key unknowns include what causes TSW and why it affects some people but not others, how many people in the UK are affected given it is described as relatively rare but widely reported on social media, and the effectiveness of current treatments or management strategies, as it is under-researched and difficult to diagnose.