Hundreds contact BBC about mystery skin condition ‘hell’ – but doctors can’t agree it exists
Hundreds contact BBC about mystery skin condition ‘hell’ – but doctors can’t agree it exists
Thousands of people share concerns over a skin disorder linked to long-term steroid use
Two weeks ago, a BBC News piece explored the growing concern surrounding a challenging skin issue that has sparked debates online, termed topical steroid withdrawal (TSW). Some individuals view it as an intense eczema flare-up, while others argue it’s a distinct medical condition. The confusion persists because healthcare professionals remain divided on its classification. The piece sparked widespread discussion, with millions engaging and over 240 readers reaching out to share their experiences.
Since the 1950s, steroid creams have been a cornerstone of eczema treatment, offering relief to countless patients. These range from mild hydrocortisone available without a prescription to stronger formulations requiring a doctor’s order. However, a growing number of patients now claim these treatments are not always effective for them, leading to a rift between doctors and patients.
“Look at what this medication has done to me? Why would I put it on my own son?”
Bethany Norman, 36, recalls her distress when her baby was diagnosed with eczema. Despite medical advice, she refused steroid creams, fearing they would harm her son. She believes the same creams that managed her lifelong eczema had triggered TSW, leaving her with painful open wounds, unrelenting itching, and skin that continuously flaked. “I felt trapped in my own body,” she says, determined to avoid repeating the same fate for her child.
Jenna Crosbie, a trainee GP in north Wales, initially struggled to understand Bethany’s decision. Her medical training had emphasized steroids as a standard treatment for eczema. But after observing her own skin changes—redness spreading despite using more creams—she began to question their role. “I now see what that A&E patient was going through,” she reflects, acknowledging the severity of TSW.
Dr. Dean Eggit, a GP in Doncaster, highlights the potential for misdiagnosis. He notes that initial signs of TSW can mimic eczema, leading doctors to prescribe steroids without investigating further. “We risk perpetuating the condition by continuing to use the very treatments that might be causing it,” he explains. Meanwhile, guidelines from the National Institute for Health and Clinical Excellence (NICE) suggest a methodical approach to eczema management, starting with emollients before introducing steroids. Yet, without proper monitoring, these protocols may not address TSW effectively.
In 2021, the MHRA acknowledged TSW as a possible reaction to prolonged steroid use, but it hasn’t formally classified it as a distinct diagnosis. This lack of clarity fuels ongoing mistrust. Dr. Pippa Bowes, an urgent care specialist in Southampton, describes the situation as a communication breakdown. “Patients often feel unheard, and some doctors are still trying to figure out what’s happening,” she says.
