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Rising concerns over topical steroid withdrawal
For years, Bethany Gamble relied on steroid creams to manage her eczema. At 18, her condition worsened dramatically, leaving her bedridden and in constant pain. Doctors dismissed her symptoms as a severe eczema flare-up, but Bethany suspected something else was wrong.
She is not alone. Thousands of people across the UK are sharing their experiences with topical steroid withdrawal (TSW), a condition where long-term use of steroid creams may trigger debilitating reactions. Videos under the hashtag #TSW on TikTok have surpassed a billion views, sparking the first UK-based research into the phenomenon.
What is TSW?
TSW, also known as red skin syndrome, remains poorly understood. Some medical experts believe it is a severe reaction to prolonged steroid cream use, while others argue it may be an extreme form of eczema or another skin condition. The lack of consensus leaves patients in a diagnostic gray area.
The Medicines and Healthcare products Regulatory Agency (MHRA) acknowledged TSW as a rare but serious reaction to steroid creams in 2021. Symptoms include intense redness, skin thickening (often called "elephant skin"), extreme shedding, and sharply defined patches of inflamed skin next to healthy areas. On darker skin tones, TSW may appear deep purple, brown, or grayish, making it harder to diagnose.
A condition shrouded in doubt
Bethany, now 21 and from Birmingham, describes years of being "gaslit" by doctors who insisted her symptoms were just eczema. "I've had eczema my whole life-this was different," she says. "My skin was hot, inflamed, and oozing. The itch was bone-deep. It consumed my entire body."
By 20, she was unable to feed herself, and her mother had to take time off work to care for her. Similar stories are emerging across the UK. Henry Jones, 22, from High Wycombe, says his symptoms forced him to drop out of university. "My GP kept prescribing more steroids, but the more I used, the worse I got," he recalls. "My skin was so tight it hurt to move. At times, I didn't want to live."
Karishma Leckraz, 32, from Kent, spent years in denial because her TSW symptoms looked different from those shared by white patients online. "It took everything from me," she says. "I hid from the world for so long."
Research and treatment gaps
Professor Sara Brown, a dermatologist at the University of Edinburgh, has secured funding from the National Eczema Society to study TSW. She and her team are analyzing symptoms, saliva samples, and skin biopsies from hundreds of participants to identify why some people develop TSW while others do not.
"We're seeing patterns that can't be explained by current eczema research," Professor Brown says. "The desperation in these patients' stories is heartbreaking."
Treatment options remain limited. The Royal College of GPs emphasizes that steroid creams are safe and effective for most eczema patients but acknowledges rare reactions in cases of long-term or inappropriate use. Patients reporting TSW symptoms often face long waits for dermatologist appointments, leaving many with no choice but to continue using steroids.
Seeking relief
At the Royal London Hospital, Dr. Alia Ahmed runs a specialist clinic offering psychological support, immunosuppressants, and phototherapy to manage chronic skin conditions. "The psychological impact is enormous," she says. "We work closely with patients to find the best treatment path."
Rebecca Ebbage, 32, turned to private treatment after NHS options failed her. She raised funds for Cold Atmospheric Plasma (CAP) therapy, a non-NHS-approved treatment costing £180 per session. After nearly a year, she says her condition is improving but stresses that CAP is not a cure.
Henry, now under the care of a TSW specialist, is finally feeling "normal again" after three years of suffering. Karishma, who stopped using steroids five years ago, has become an advocate for skin condition awareness, appearing in marketing campaigns and sharing her story globally.
A call for awareness and support
Andrew Procter of the National Eczema Society describes TSW patients as "stuck between a rock and a hard place." While steroids work for millions, the fear and uncertainty surrounding TSW are real. "More research is desperately needed," he says.
Bethany, now on biologics and recently starting her first job, offers a message to others struggling: "Do not feel guilty. Do not feel like it's your fault. Fight to be believed."
