For most of her life, Karyn Flett, a 54-year-old woman from Thornton in Fife, depended on topical steroid creams to manage her chronic eczema. The treatment was standard, and repeat prescriptions became a way of life. However, when she decided to stop using the creams three years ago, her condition took a drastic and terrifying turn.
“You basically get no sleep whatsoever,” she shared. “You’ve got mass insomnia and you’re scratching. It’s a deep bone itch, like a neuropathic itch. You tear like you’re trying to get down to the bone. It’s absolutely relentless.”
She went on to describe intense thermal dysregulation, the inability to sweat, and a burning sensation from within her body.
“It’s excruciating,” she said. “It’s something that you wouldn’t wish on your worst enemy… I don’t want to be here, to be honest.”
Her deep regret lies in a choice made years ago.
“I just regret the very day we walked into that doctor’s office and I was given those little tubes of cream. They looked so innocent. But as far as I’m concerned, it’s absolute hell in a tube just waiting to unfold.”
Topical steroids are among the most commonly prescribed medications by GPs in the UK. They are used to treat a variety of skin issues, and many Scots have used them at some point. However, concerns are mounting as more people, both patients and healthcare professionals, begin to question the long-term safety of these medications.
Some users report reactions so severe that they dwarf the original condition they were treating. These extreme responses are often identified as Topical Steroid Withdrawal (TSW) — a controversial and poorly understood condition. Despite the growing number of reports, there is no formal medical pathway for TSW, as it is not an officially recognized clinical diagnosis. As a result, patients experiencing these symptoms are often left without support or treatment.
Karyn eventually found support through a community on TikTok, where many were sharing similar stories. It was there she met Anna Chrystal, a maxillofacial surgeon from Aberdeen who had also developed TSW after following a conventional steroid regimen.
“I used a 1% hydrocortisone cream,” Anna explained. “It took the eczema away temporarily, but as soon as I stopped using it, the condition came back. So my GP increased the potency.”
This cycle led to a total breakdown of her health.
“I was oozing, weeping, bleeding and itchy to my bones from head to toe,” Anna recalled. “I had to be bandaged on my limbs and neck two or three times a day. I couldn’t feed myself or even go to the toilet without assistance.”
Her condition eventually forced her to step away from her career.
“I spent years training as a surgeon — washing my hands constantly and wearing gloves. That’s just not something I’m going to be able to do anymore.”
Anna has since shifted her focus within medicine, choosing less hands-on specialties.
Both Karyn and Anna now rely on strong immunosuppressive drugs, typically reserved for transplant or cancer patients. They also describe a lack of recognition and support from the medical community, with some specialists dismissing their concerns altogether.
“I spoke to dermatology colleagues during medical school,” Anna said. “They told me TSW wasn’t real — just worsening eczema exaggerated on social media.”
However, there is a glimmer of hope. Dr Ian Myles from the National Institute for Health in the U.S. began investigating TSW after hearing from patients about their struggles. He discovered that the medical literature on TSW was sparse, with only a few debates scattered in academic circles.
“There was a tonne of information on Google,” he noted. “But very little in peer-reviewed journals.”
Dr Myles conducted a study involving 16 participants with suspected TSW and discovered something noteworthy — an overproduction of niacin at the cellular level, which was not found in patients with traditional eczema.
“It was surprisingly clear,” he said. “Once you identify the niacin overproduction, you can explain all the other symptoms that patients have — the ones that are not part of typical eczema.”
He hopes this discovery will shift the conversation.
“I hope the debate about whether TSW is real is over,” he stated. “We need more research, more understanding, and new studies using the criteria we’ve established.”
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