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 an article for BBC News exploring the growing concern surrounding a severe skin condition dubbed topical steroid withdrawal (TSW). While some view it as an intense eczema flare-up, others argue it represents a distinct medical issue. Despite its prevalence, healthcare professionals remain divided on its classification. The piece sparked widespread engagement, with millions reading it and over 240 individuals sharing their experiences. This led to deeper conversations with patients and doctors, shedding light on the ongoing debate.
A mother’s dilemma
Bethany Norman, a 36-year-old mother, recounts her harrowing experience with TSW. While hospitalized, she wrapped her arms in bandages, gripping her newborn son tightly. Her son had eczema, yet she refused steroid creams, convinced they had worsened her own condition. “Look at what this medication has done to me? Why would I apply it to my child?” she recalls shouting. Her skin was plagued by open sores, persistent itching, and unceasing flaking, leaving her feeling trapped in her own body. She feared her son would endure the same fate if treated with steroids.
Doctors’ uncertainty
Despite the widespread use of steroid creams since the 1950s, some patients now question their effectiveness. These creams, ranging from mild hydrocortisone to prescription-strength formulations, have long been a cornerstone of eczema treatment. Yet, a growing number of individuals claim they exacerbate their symptoms. This divergence in perspectives complicates diagnosis, as the condition is not officially recognized with a standardized set of symptoms.
In 2021, the MHRA acknowledged TSW as a reaction to prolonged steroid use, but stopped short of categorizing it as a distinct medical condition. “There can be a breakdown of communication,” says Dr. Pippa Bowes, an urgent care physician specializing in acute dermatology. “Patients often feel unheard, and some professionals struggle to grasp the underlying issue.”
Shifting perspectives
Jenna Crosbie, a 29-year-old trainee GP in north Wales, initially found it puzzling that a patient like Bethany would reject steroids. Her medical training emphasized their role as a first-line treatment for eczema. However, after observing her own skin symptoms evolve, Crosbie began questioning this approach. While working night shifts, she noticed her redness spreading despite using more potent steroids. Upon further investigation, she realized her symptoms deviated from typical eczema. Her GP’s support helped her understand the challenges faced by the A&E patient she had previously seen.
“I wouldn’t wish this on my worst enemy,” Crosbie reflects. This revelation highlights a growing awareness among healthcare providers about the potential for steroid creams to inadvertently trigger TSW. Dr. Dean Eggit, a GP in Doncaster, suggests that misdiagnosis may occur when doctors prescribe steroids without exploring underlying causes. “The early stages of TSW can resemble the original eczema rash,” he notes. “This makes it easy to overlook the role of steroids in the condition’s progression.”
Guidelines in question
The National Institute for Health and Clinical Excellence (NICE) advocates a stepwise approach to eczema treatment, beginning with emollients and progressing to steroids. Yet, in practice, follow-ups may be overlooked. Dr. Adrian Hayter from the Royal College of GPs explains: “If a patient is on a repeat prescription for steroids, we need to ensure their usage is monitored and adjusted as necessary.” This process, however, is not always executed consistently, leaving room for confusion and conflict between patients and medical professionals.
