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 penned a BBC News piece exploring the growing concern surrounding a debilitating skin issue that has sparked online discussions. Known as topical steroid withdrawal (TSW), this condition has left many individuals grappling with intense symptoms, even as medical professionals remain divided on its classification. The article resonated widely, drawing over 2.4 million readers and prompting contact from 240 individuals eager to share their experiences.
The confusion centers on whether TSW is a severe eczema flare or a distinct ailment. Patients like Bethany Norman, a 36-year-old mother, describe it as an agonizing state where their skin becomes a battleground. Refusing steroid creams for her son, she recalls screaming in hospital: “Look at what this medication has done to me? Why would I put it on my own son?” Her body had become a site of open wounds, relentless itching, and constant flaking. She felt trapped, fearing her baby might suffer the same fate.
“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.” – Bethany Norman
For decades, steroid creams have been a cornerstone of eczema treatment. Ranging from mild over-the-counter options to prescription-strength variants, they’ve helped countless people manage their symptoms. Yet, a growing number of patients report that these creams no longer provide relief—and may even exacerbate their condition.
Dr. Pippa Bowes, an urgent care specialist in Southampton, highlights the challenge: “There can be a breakdown of communication.” Patients often feel unheard, while some doctors struggle to comprehend the severity of their symptoms. Jenna Crosbie, a trainee GP in north Wales, recalls a moment in A&E when she encountered a patient with TSW. “It looked like the most severe full-body eczema I’d ever seen,” she says. “I couldn’t understand why the patient was refusing steroids.”
Later, Crosbie noticed her own skin deteriorating after using more potent steroids during night shifts. The redness spread, and her symptoms diverged from typical eczema. After research, she stopped using the creams, thanks to her GP’s support. “I wouldn’t wish it on my worst enemy,” she now admits.
Does steroid use fuel the condition?
Dr. Dean Eggit, a GP in Doncaster, raises concerns about misprescription. “Steroid creams are vital, but they can be wrongly prescribed,” he notes. GPs might prescribe them hastily, focusing on the rash rather than underlying causes. “The early stages of TSW can resemble the original eczema rash,” he explains. “This creates a risk of continuing the cycle that might be triggering it.”
NICE guidelines advocate a stepwise approach to eczema treatment, starting with emollients and progressing to steroids as needed. However, the absence of clear diagnostic criteria leaves patients and doctors in uncertainty. The MHRA recognized TSW in 2021 as a reaction to prolonged steroid use, but not as an official diagnosis. This ambiguity fuels mistrust, with patients questioning whether their symptoms are dismissed or misunderstood.
