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
Two weeks ago, I published an article in BBC News exploring the effects of a serious and frequently misinterpreted skin issue gaining traction on social media, known as topical steroid withdrawal (TSW). Some individuals describe it as an extreme form of eczema, while others claim it’s a distinct condition altogether. The disagreement among medical professionals persists, leaving the condition in a state of uncertainty. The piece sparked significant interest, with millions reading it and 240 people reaching out to share their experiences.
A Mother’s Fight
Bethany Norman, a 36-year-old mother, clutched her baby son while wrapped in bandages at the hospital. Her son had eczema, but she refused to apply steroid creams, defying doctors’ advice. “Look at what this medication has done to me? Why would I put it on my own son?” she recalls shouting. She believes the creams prescribed for her lifelong eczema had triggered TSW. At the time, her skin was covered in open sores, suffering from an unrelenting, bone-deep itch, and continuously flaking. She described feeling trapped in her own body.
“I’ve been told by countless medics that all I have is a severe flare up of eczema and steroid creams will sort it. They just made it worse.”
The Medical Debate
Topical steroid creams have been a staple in treating eczema since the 1950s, helping countless people manage symptoms and live normally. They range from mild over-the-counter options like hydrocortisone to stronger prescription treatments. Yet, a growing number of patients argue these creams no longer work for them. This has created a challenge for healthcare providers.
In 2021, the MHRA, the UK’s medicine regulator, acknowledged TSW as a response to prolonged steroid use, though it hasn’t officially classified it as a diagnosable condition. With limited research and clear solutions, tensions continue to rise between patients and doctors. “There can be a breakdown of communication,” says Dr. Pippa Bowes, an urgent care physician in Southampton specializing in acute dermatology. “Unfortunately, patients often feel unheard, and some medical professionals struggle to grasp what’s happening.”
Shifting Perspectives
Jenna Crosbie, a trainee GP in north Wales, initially couldn’t fathom why a patient like Bethany would avoid steroid creams. Her training emphasized these as first-line treatments for eczema. She had relied on them for years to manage her own flare-ups. However, after encountering a patient with TSW during her A&E shift, she began questioning her approach. “I remember thinking it looked like the worst eczema I’d ever seen, and I couldn’t understand why the patient was refusing steroids,” she says.
Later, Crosbie noticed her own skin condition worsening. She had been using higher-potency steroids during night shifts, but the redness spread. After researching and realizing her symptoms differed from typical eczema, she stopped using the creams. Her GP supported her decision, and she now empathizes with the patient she once puzzled.
“I wouldn’t wish it on my worst enemy,” she says.
Could some doctors be inadvertently contributing to TSW by prescribing steroids too readily? Dr. Dean Eggit, a GP in Doncaster, suggests that while steroids are essential, they can be misused. He notes that GPs often see a rash and prescribe steroids without investigating underlying causes. “Unfortunately, the initial signs of TSW can mimic the original eczema rash,” he explains. “This means we risk continuing to use creams that might be worsening the condition.”
