Woman ‘left bedbound and unrecognisable with oozing, elephant-like skin’ after 28 years of steroid cream use for eczema

A woman said she was left bedbound with “oozing”, elephant-like skin – so severe she was “unrecognisable” – after 28 years of using steroid creams for eczema, which she believes triggered topical steroid withdrawal.

Rosemary Hook, 29, said she has been prescribed steroid creams for eczema since she was three-months-old, at increasing strengths, and claims the medication’s information leaflets advise limiting use to one week at a time.

After moving to London in 2016, she said her condition dramatically worsened – her skin turned red and inflamed across her entire body, she began losing clumps of hair, and the pain left her immobile.

Turning to social media, she became convinced she was caught in a “vicious cycle” of topical steroid withdrawal (TSW), believing the medication was worsening her symptoms while making her “dependent” on it.

For a decade she said she endured “alien-looking” skin, along with depression and anxiety, and claims her GP dismissed her concerns, prescribing her immunosuppressants to help manage the symptoms, including a type of chemotherapy drug.

When her condition deteriorated further in 2025, she flew to Thailand that December for plasma therapy – which she said has been “life-changing” and she can finally recognise herself again.

At £200 per session, she now faces up to five years of ongoing treatment, and has set up a fundraiser to ensure she can carry on having it.

Rosemary, a technician at the Bartlett School of Architecture, University College London, told PA Real Life: “My skin became thickened in places, almost like an elephant skin texture, but at the same time incredibly fragile.

“I had deep cracks in areas, and even small movements could cause the skin to split or tear, so basic things like getting dressed were painful.

“There was also large, constant flaking and shedding throughout the day, and I was dealing with ongoing irritation, including areas that would ooze or bleed, which made it physically exhausting to manage.

“It changed my appearance so much that I didn’t recognise my own face or body at times, and that made me incredibly anxious about leaving the house or being seen.”

Rosemary said she has been prescribed steroid cream for her full-body eczema since she was three-months-old.

Over the years, she was given creams with increasing potency, but she said they did not seem to make “much of a difference”.

When she moved to London in 2016, her skin had a “big flare up”, becoming extremely red, painful and inflamed.

Desperate for answers, she took matters into her own hands and found others on social media discussing topical steroid withdrawal – thought to be an extreme withdrawal response to the prolonged use of steroid creams.

Rosemary thinks this is the cause of her symptoms, but said doctors have refused to officially diagnose her and instead prescribed immunosuppressants, including a type of chemotherapy drug.

Her symptoms, such as red and inflamed skin all over her body, have continued for the past 10 years, and have caused severe pain, making her immobile at times.

Before this, she said was “active and sporty”, with no mobility issues.

Over time, her hair has fallen out in clumps, and she has struggled to carry out basic tasks such as washing and cooking.

She has been bedbound on numerous occasions and has had to stop working for weeks at a time.

She said: “I’ve struggled with anxiety and depression – I was isolating myself so much because of the way I looked and because I wasn’t able to physically move, I was just in complete survival mode for a very long time.”

She said she had tried stopping her medication to see how her skin would react, but it would “instantly” worsen, which she believed indicated her skin was “completely dependent” on it.

She explained: “The rebound effects, of my skin burning and being so red, made me give in and use them again so it was like a vicious cycle until they stopped working entirely.”

Over the years, she has seen “countless” specialist dermatologists in London, and said she was “dismissed and laughed at” for raising concerns that the steroid creams were causing more harm.

“On the labels of my creams it says that they should only be used for the maximum of one week at a time,” she said.

“GPs have told me I’m not looking after myself properly, and that I’m deliberately trying to make myself unwell.

“People tend to look at me in public because of my skin, and it does look quite alien at times.”

More recently, Rosemary has joined support groups on social media and discovered TikTok accounts where others share their experiences under the TSW hashtag.

She said: “There are thousands and thousands of people with the same experiences as me, but it’s so under-researched and the NHS don’t really recognise the condition.”

Since summer 2025, Rosemary’s skin has worsened further, becoming “bright red and swollen” and feeling like “elephant skin”, often cracking and oozing.

Through her research on social media last year, she came across a clinic in Thailand offering Cold Atmospheric Plasma (CAP) therapy.

It uses ionized gas which claims to promote skin healing, reduce inflammation, and eliminate pathogens.

She began treatment in Thailand in December 2025, costing £200 for a full-body session once a week.

She said: “It’s been amazing so far, and pretty life changing – I can now recognise myself in the mirror.

“I can be fully independent again in terms of daily activities.

“My skin is getting so much stronger without any medication.

“There’s a long way to go – it’s easily triggered by irritants and I can’t really go anywhere here in Thailand because of the heat and the sweat.”

She has two months of weekly sessions remaining and will then return to the UK to continue treatment at a specialist clinic, with sessions becoming less frequent over time.

But her specialists estimate she will need treatment for the next five years, eventually reducing to just a few sessions a year.

Her treatment has been a “financial burden”, although she said her employer has allowed her to take medical leave.

She has set up a fundraiser, with the goal of £6,000, to help fund future treatments.

She added: “It would just take all of the worry away, if I met the target, and would mean I’d get my life back.”

According to the NHS website, people who have been using topical corticosteroids for a long time should talk to their doctor to review their treatment, where they may be advised to stop gradually to avoid a withdrawal reaction.

Those who stop using topical corticosteroids after using them continuously for a long time, usually more than 12 months in adults, may have a withdrawal reaction which can sometimes be severe.

To donate to Rosemary’s fundraiser, visit: www.gofundme.com/f/help-rosie-heal-from-topical-steroid-withdrawal.