Rosemary Hook, 29, was prescribed the cream since she was three months outdated
Rosemary is now having therapy in Thailand (Picture: PA Actual Life)
A girl has revealed she was left bedbound with “oozing”, elephant-like pores and skin – so extreme she was “unrecognisable” – after 28 years of utilizing steroid lotions for eczema, which she believes triggered topical steroid withdrawal. Rosemary Hook, 29, says she had been prescribed steroid lotions for eczema since she was three months outdated, at rising strengths, and claims the remedy’s data leaflets advise limiting use to 1 week at a time.
After relocating to London in 2016, her situation dramatically deteriorated – her pores and skin turned crimson and infected throughout her complete physique, she started dropping clumps of hair and the ache left her utterly motionless. Turning to social media for solutions, she grew to become satisfied she was trapped in a “vicious cycle” of topical steroid withdrawal (TSW), believing the remedy was aggravating her signs whereas making her “dependent” on it.
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For a decade she endured “alien-looking” pores and skin, alongside despair and anxiousness, and claims her GP dismissed her issues, prescribing immunosuppressants to assist handle her signs, together with a kind of chemotherapy drug. When her situation worsened additional in 2025, she travelled to Thailand that December for plasma remedy – which she describes as “life-changing”, saying she will be able to lastly recognise herself as soon as extra.
At £200 per session, she now faces as much as 5 years of constant therapy and has launched a fundraiser to make sure she will be able to maintain it.
Rosemary, a technician on the Bartlett Faculty of Structure, College School London, mentioned: “My pores and skin grew to become thickened in locations, virtually like an elephant pores and skin texture, however on the identical time extremely fragile. I had deep cracks in areas, and even small actions may trigger the pores and skin to separate or tear, so staple items like getting dressed have been painful.
“There was additionally massive, fixed flaking and shedding all through the day, and I used to be coping with ongoing irritation, together with areas that will ooze or bleed, which made it bodily exhausting to handle. It modified my look a lot that I did not recognise my very own face or physique at occasions and that made me extremely anxious about leaving the home or being seen.”
Rosemary defined she had been prescribed steroid cream for her full-body eczema since she was three months outdated. All through the years, she acquired lotions with progressively stronger efficiency, but she mentioned they appeared to make “a lot of a distinction”.
When she relocated to London in 2016, her pores and skin skilled a “massive flare up”, turning into exceptionally crimson, painful and infected. Desperately in search of solutions, she took management of the scenario herself and found others on social media discussing topical steroid withdrawal – believed to be an excessive withdrawal response to the prolonged use of steroid lotions.
Rosemary believes this to be the foundation reason behind her signs, but claims medical doctors have refused to formally diagnose her, as a substitute prescribing immunosuppressants, together with a kind of chemotherapy drug. Her signs, akin to crimson and infected pores and skin throughout her physique, have endured for the previous 10 years, inflicting extreme ache and leaving her motionless at occasions.
Previous to this, she described herself as “energetic and sporty”, with no mobility points. Over time, her hair has fallen out in clumps, and he or she has struggled to hold out primary duties akin to washing and cooking. She has been bedbound on quite a few events and has been pressured to cease working for weeks at a time.
She mentioned: “I’ve struggled with anxiousness and despair – I used to be isolating myself a lot due to the way in which I appeared and since I wasn’t in a position to bodily transfer, I used to be simply in full survival mode for a really very long time.”
She revealed that she had tried to cease taking her remedy to watch how her pores and skin would react, however it could “immediately” deteriorate, which she felt advised her pores and skin was “utterly dependent” on it.
Rosemary needed to cease working for weeks at a time (Picture: PA Actual Life)
She defined: “The rebound results, of my pores and skin burning and being so crimson, made me give in and use them once more, so it was like a vicious cycle till they stopped working solely.”
Through the years, she has consulted “numerous” specialist dermatologists in London, and revealed she was “dismissed and laughed at” for voicing issues that the steroid lotions have been inflicting additional harm.
“On the labels of my lotions it says that they need to solely be used for the utmost of 1 week at a time,” she mentioned.
“GPs have instructed me I am not taking care of myself correctly, and that I am intentionally making an attempt to make myself unwell. Folks have a tendency to take a look at me in public due to my pores and skin, and it does look fairly alien at occasions.”
Extra lately, Rosemary has joined social media help teams and stumbled upon TikTok accounts the place fellow victims share their tales beneath the TSW hashtag.
She mentioned: “There are 1000’s and 1000’s of individuals with the identical experiences as me, however it’s so under-researched and the NHS do not actually recognise the situation.”
Since summer season 2025, Rosemary’s pores and skin has deteriorated additional, turning “vivid crimson and swollen” and feeling like “elephant pores and skin”, incessantly cracking and oozing. By her social media analysis final yr, she found a clinic in Thailand providing Chilly Atmospheric Plasma (CAP) remedy.
The therapy utilises ionised gasoline, which purportedly promotes pores and skin therapeutic, reduces irritation and eliminates pathogens. She commenced therapy in Thailand in December 2025, at a value of £200 per full-body session as soon as every week.
She mentioned: “It has been superb thus far, and fairly life-changing – I can now recognise myself within the mirror. I might be totally impartial once more when it comes to each day actions.
“My pores and skin is getting a lot stronger with none remedy. There is a lengthy option to go – it is simply triggered by irritants and I can not actually go anyplace right here in Thailand due to the warmth and the sweat.”
Rosemary has been bedbound on quite a few events (Picture: PA Actual Life)
Two months of weekly periods stay earlier than she returns to the UK to proceed therapy at a specialist clinic, the place appointments will step by step develop into much less frequent. Nevertheless, her specialists estimate she would require therapy for the following 5 years, finally tapering all the way down to only a handful of periods yearly.
Her therapy has proved a “monetary burden”, although her employer has permitted her to take medical go away. She has launched a fundraiser, with a goal of £6,000, to help in masking the price of future remedies.
She added: “It could simply take the entire fear away, if I met the goal, and would imply I might get my life again.”
Based on the NHS web site, those that have been utilizing topical corticosteroids for an prolonged interval ought to seek the advice of their physician to evaluate their therapy, the place they could be suggested to discontinue use step by step to keep away from a withdrawal response. Those that stop utilizing topical corticosteroids after extended steady use, usually greater than 12 months in adults, could expertise a withdrawal response, which might every so often be extreme.
To donate to Rosemary’s fundraiser, go to her GoFundMe.
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