A former athlete has been left in a “living hell” for the past three years after experiencing dramatic withdrawal symptoms from steroid creams prescribed to help his “mild” eczema.
Henry Jones was in the prime of life, studying at university alongside powerlifting and diving in his spare time when the condition – named topical steroid withdrawal (TSW) – took hold.
But now, the 22-year-old has been largely housebound due to extreme pain, and was forced to drop out of his studies and athletic endeavours while he battles debilitating symptoms including burning, oozing and shedding skin.
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“It has totally destroyed my life,” Henry, from High Wycombe, Buckinghamshire, told Need To Know.
“For the past three years, I have been living in absolute hell.
“At times, I’ve been unable to wear clothes or even shower – with water and sweat making my skin burn and feeling excruciating.
“What once was itchy, dry skin has become a whole different monster.”
Henry was first prescribed a topical steroid at the age of 12, and used it very sparingly over the years that followed to treat patches of eczema, particularly around his wrist.
He developed eyelid eczema at 15, which he puts down to his regular activity in chlorine swimming pools, and the stress of GCSE exams, and again used the cream.
He said: “I used it as and when needed, and found it worked like a miracle for my eyelids.
“But by January 2020, I noticed that the ‘eczema’ was spreading across my face and neck in burning patches.”
Believing at the time that it was still eczema, Henry used the steroids for another two years – and it was only when he ran out of a large tub of the ointment he’d been using that it started to spread across much of his body.
Soon, his scalp, arms, chest, back, torso and legs were covered in inflamed, dry red skin – and, once again, his doctor prescribed steroid creams.
But this time, they stopped working.
Henry claims that by November 2022, the steroids had become ineffective, and he started to experience a painful, burning sensation across the affected skin.
He said: “I decided to come off the steroids altogether for two weeks, just to see what would happen.
“That was the day my life ended.
“In the first week, the red patches grew to massive areas that completely covered my body.
“I lost hair, shed skin daily, couldn’t sleep and lost 10kg in four weeks.”
Henry claims a dermatologist told him it was “severe uncontrolled eczema”.
But the student was convinced something more sinister than eczema was at play, and came across support groups for people experiencing TSW while researching his symptoms online.
He said: “I could not believe what I was seeing – people who had used the same steroid creams simply for months or years had ended up in a protracted 3-5 year-long withdrawal and rebound process.
“They reported symptoms like having a bone-deep itch, oozing skin that would smell like pennies, raw bleeding skin and incessant, endless flaking.
“I was horrified.”
Also known as red skin syndrome, TSW has been reported in people who use steroid creams – often for the treatment of eczema and other skin issues.
As the pain persisted, Henry struggled to sleep and properly care for himself, and was forced to drop out of university in February 2023.
While he visited several dermatologists, he claims they all stated he was simply dealing with “worsening eczema”.
All the while, he was continuing to deteriorate.
Henry said: “My skin cycled through being red, swollen and burning, oozing, extreme flaking and tightness, and then the drawing together of thin shiny skin.
“I was unable to sleep properly until 5am for weeks on end, experienced extreme cortisol and adrenal dysregulation, lost weight.
“I also experienced zingers – neuropathic shocks – and hot and cold flushes, plus heart palpitations and breathlessness, and massive raised lymph nodes in my neck, scalp, groin, face and armpits.
“I lose hair across my scalp, body, eyebrows and eyelids.
“I knew this was not just ‘simple eczema’.”
Henry has tried “countless” treatments, including limiting his shower intake, restricting his diet, red light therapy, and taking various supplements – all to no avail.
He is currently working with a new dermatologist, who formally diagnosed him with topical steroid withdrawal, and has been prescribed a new medication, a form of JAK enzyme inhibitor, used to treat chronic inflammatory diseases.
Henry, who now works in administration for a university, said: “My skin is slowly improving and I’m beginning to live a more normal life.
“In the future, I would love to get back into diving, and possibly even coaching.
“I want to take part in the team atmosphere and be able to move freely again.
“I am hopeful that the new medication will give me the ability to exercise consistently at the gym.
“In my wildest imagination, I never would’ve thought that my passions, health and mobility would’ve been stripped from me the way that they have for the past three years.
“I am going to continue eating consistently, take pre and probiotics, exercise regularly, including yoga and dance, and ensure that I can nurse my own health back to a less volatile point.
“I want to spread as much awareness as I can about TSW – especially as I never thought this would have happened to me in a million years.”
Henry urges anyone who believes they may be suffering from TSW to report their symptoms to the government’s yellow card scheme site, and seek support online.
