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

A few weeks back, I penned a BBC News piece about a troubling skin issue gaining traction on social media, dubbed topical steroid withdrawal (TSW). While some view it as an extreme form of eczema, others argue it’s a distinct condition. Yet, medical professionals remain divided on its classification. The article resonated widely, with millions reading it and over 240 individuals reaching out to share their experiences. Now, I’ve spoken to more patients and doctors to uncover why this condition continues to perplex the medical community.

Parents’ fears and personal battles

Bethany Norman, 36, recalls clutching her newborn son while wrapped in bandages. He had eczema, but she refused steroid creams, fearing they’d harm him as they had her. “Look at what this medication has done to me? Why would I put it on my own son?” she remembers shouting. She believes the creams prescribed for her lifelong eczema had triggered TSW, leaving her with open wounds, unrelenting itch, and skin that wouldn’t stop peeling. “I felt like a prisoner in my own body,” she says. For Bethany, the risk of passing her condition to her child was too great.

“They just made it worse,” Bethany says, reflecting on her frustration with medical advice.

For years, steroid creams have been a cornerstone of eczema treatment. From mild hydrocortisone available over the counter to stronger prescription versions, they’ve helped countless people manage symptoms and lead normal lives. But a growing number of patients claim these creams no longer work for them. Instead, they describe a worsening condition that defies traditional diagnosis.

Conflicting views and diagnostic uncertainty

The confusion stems from the lack of consensus on TSW’s definition. In 2021, the MHRA acknowledged it as a reaction to prolonged steroid use, but not as a formally recognized condition. This ambiguity has fueled mistrust between patients and doctors. Dr Pippa Bowes, an urgent care specialist in Southampton, explains: “There can be a breakdown of communication. Patients often feel unheard, and some medical professionals struggle to grasp the complexity.”

“Unfortunately the beginnings of TSW can look like the original eczema rash in the first place,” Dr Dean Eggit notes, highlighting the challenge of identifying the condition early.

Jenna Crosbie, a trainee GP in north Wales, initially found it hard to understand why a patient would avoid steroids. Her training had emphasized their role as a primary treatment for eczema. But after her own skin condition evolved, she began to see the connection. She noticed her symptoms diverging from typical eczema, prompting her to stop using topical steroids. “I wouldn’t wish it on my worst enemy,” she says, now empathizing with those who had previously seemed resistant to treatment.

Guidelines from NICE recommend a gradual approach to eczema management, starting with emollients and progressing to steroids. However, the process relies on follow-ups to ensure proper use. Dr Adrian Hayter of the Royal College of GPs warns that repeated prescriptions without such checks might inadvertently worsen TSW. “If a patient is on a repeat steroid regimen, we need to monitor their response and adjust as needed,” he says. Yet, the lack of clear protocols and research continues to leave many in the dark.