Just three prescriptions of steroid cream for eczema have left Sophie Cooper suffering with red, sore and bleeding skin covering 95% of her body.
She had suffered with eczema as a child, but when it got worse in 2023 she sought help from her general practitioner, who prescribed steroid creams.
Three 10-week courses of the cream — each time getting progressively stronger — did nothing to clear the itchy skin on her arms, so she stopped.
But that's when she began to suffer from topical steroid withdrawal — an often misunderstood reaction to halting the use of steroid cream.
Cooper, 21, said she wasn't aware there was a risk of withdrawal from steroids until she read the fine print on the boxes — but by then it was too late.
Within weeks, red, sore and "oozing" patches spread across her face and body, until 95% of her body was in agony.
Despite being off the creams for 18 months, her condition is so debilitating she can't work and says showering is like an "acid bath."
Sophie has red, sore and bleeding skin covering 95% of her body, also known as topical steroid withdrawal. (William Lailey via SWNS)
She's often left sobbing, and after months of hiding her flaky, bloody skin from even friends and family, she has started to share her videos on TikTok — soon gathering around 9,000 supporters.
A recent paper by skin experts revealed the problem is widely discussed on social media, and #TSW has over 1.1 billion views on TikTok.
Despite that, a recent survey of U.K. dermatology clinicians revealed only 34% believe TSW is a distinct condition, leaving sufferers like Cooper frustrated and unheard.
"The itching is so intense," said Cooper, of Canterbury, Kent, who works in sales.
"People say 'just don't scratch' — but it's bone deep, like you want to claw your skin off to get right down to your bone.
"I have to change my bedsheets every morning and vacuum the bed and the floor from all the skin that comes off in my sleep.
"I have blood on the sheets every day.
"Showers are like acid being poured on me, or getting sunburn with a thousand paper cuts on you at the same time.
Sophie Cooper said she suffered from eczema as a child, but it got worse in 2023. (William Lailey via SWNS)
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"The other day I managed to go out for a burger with my boyfriend, but I couldn't even eat it because moving my jaw to bite it opened up sores on my face and they started to weep.
"When it oozes, I can't sleep lying down at night because it makes my face ooze and crust all over. I have to sleep sitting up."
Cooper had eczema as a child but noticed it worsening in 2023, spreading further up her arms, which she put down to stress after finishing sixth form.
Unaware of the risks, she was prescribed a 10-week course of steroid cream by a GP — then a course of medium-strength cream, then a course of strong steroid cream — none of which worked.
But by the end of 2023, she was told by doctors that nothing more could be done for her if she didn't want to take more steroids, and she stopped using the creams when her prescriptions ran out.
Months later, she began to notice her skin getting worse.
Red, itchy patches spread across her body and further trips to the GP proved fruitless, as she begged to be referred to specialists.
By November 2025, nearly every inch of her body was impacted by the condition — and this remains true today.
She said: "That was when I became concerned it might be topical steroid withdrawal.
"It's this burning, intense itching, inflammation."
Sophie holding the creams and lotions she uses to treat her skin now. (William Lailey via SWNS)
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Cooper is on a waiting list for ultraviolet light therapy (UVB), which the NHS says can reduce inflammation, and injections that might help.
But she has been waiting for months — while the condition has continued to tear her life apart.
"Now it pretty much covers all of me — bar my feet," she said.
"I suffer with insomnia, nerve pain, I struggle with temperature regulation as well as bleeding and oozing.
"It is hell on earth. It is all I can think about and all I feel it every day.
"I'm a completely different person to who I was — I used to be so confident, love makeup and fashion, and love taking pictures for Instagram.
"Some people mistake me for a burn victim. Others come up to me in the street and ask if I'm okay.
"I'm housebound most days and I can't work. It's so much more than just red and itchy skin.
"At last no comments about it can hurt me — because nothing can hurt me more than my own skin does."
She is on sick leave from her sales job as she was unable to get into work most days, can't wear a uniform that covers her arms, and often has open wounds that cause an infection risk.
She was even hospitalized in April after developing cellulitis from one of the open sores on her body — which led to her "screaming in pain" when a doctor used an alcohol wipe on her arm before injecting her.
She said she even begged to be put in an induced coma while delirious from the pain — just so she could stop feeling the pain and itching, and let her body recover — but they wouldn't.
(William Lailey via SWNS)
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Cooper fears if she takes much more leave, her employers will want to replace her with someone more reliable.
She wants greater awareness among people and doctors of the dangers of steroids because she claims she had no idea, and wasn't warned of the risks.
She said: "It's actually quite rare for GPs to recognize topical steroid withdrawal — even though it's mentioned on the NHS website.
"How am I sat here like this while GPs are still gaslighting us that it's not a real thing?"
She has been waiting for a patch test on the NHS for three years already — but says now her TSW has spread to her back, she suspects they will refuse to do the skin test, which would be on her back.
Cooper said: "It's a very isolating condition, and some of the worst moments of my life, but I'm here and alive, and trying to get through it.
"There is very little research, and I feel like myself and the TSW community have been failed by the NHS.
"So now I am spreading my own awareness online, because this is so much more than just red itchy skin — and I don't want other sufferers to feel alone.
"It hurts my heart to see parents putting steroid creams on their children because they don't know any better."
In spite of the difficulties her skin brings, she was recently confirmed to be a Miss Great Britain Kent finalist.
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