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 effects of a challenging skin issue that has sparked widespread discussion online—topical steroid withdrawal (TSW). While some view it as a severe form of eczema, others believe it’s a distinct condition. The lack of consensus among medical professionals has left patients and doctors in a state of uncertainty. The piece received significant attention, with millions of readers engaging and 240 individuals reaching out to share their experiences.

Bethany Norman’s battle with TSW

Bethany Norman, a 36-year-old mother, recounts her struggle with TSW after discontinuing steroid creams for her eczema. “Look at what this medication has done to me? Why would I put it on my own son?” she remembers shouting while holding her newborn in hospital, arms bandaged. Her skin had developed open wounds, a persistent, bone-deep itch, and constant flaking. She felt trapped within her own body, fearing her son would face the same fate if he received the same treatment.

“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.”

Steroid creams have long been a cornerstone of eczema management, ranging from mild over-the-counter hydrocortisone to stronger prescription versions. Yet, a growing number of patients claim these treatments are no longer effective for them, leading to a divide between those who rely on them and those who experience worsening symptoms.

Doctors’ confusion over TSW

Dr. Pippa Bowes, an urgent care physician in Southampton specializing in acute dermatology, notes the communication challenges. “There can be a breakdown of trust,” she explains. “Patients often feel unheard, and some doctors struggle to grasp what’s happening.” This tension is evident in cases like that of Jenna Crosbie, a trainee GP in north Wales. Initially, she couldn’t fathom why a patient would refuse steroids, having learned they are a standard treatment for eczema.

Crosbie later discovered her own skin condition had shifted. After using more potent steroids during night shifts, she noticed redness spreading and symptoms differing from typical eczema. “I wouldn’t wish it on my worst enemy,” she says, reflecting on the ordeal.

Prescription practices and potential risks

Dr. Dean Eggit, a GP in Doncaster, highlights how steroid creams can be misused. “GPs may see a red rash and immediately reach for a steroid,” he admits. “But the early stages of TSW can resemble the original eczema, making it easy to overlook.” This pattern could perpetuate the condition, as repeated use might worsen symptoms rather than alleviate them.

The MHRA acknowledged TSW in 2021 as a reaction to prolonged steroid use, though it isn’t officially classified as a recognized medical condition. Without clear diagnostic criteria, both patients and doctors face difficulties in understanding and addressing the issue. NICE guidelines recommend a stepwise approach, starting with emollients and adjusting steroid potency as needed, but follow-ups are crucial to prevent over-reliance on these treatments.