A woman has spoken out about the horrifying reality of steroid cream usage – after adverse effects left her with agonisingly itching and burning skin.
Sophie Purvis was left feeling “on fire” and even became worried she had cancer after finding a lump in her breast – which turned out to have been a result of the “bone-deep” itch.
While the 37-year-old’s ongoing plight has been extreme, its cause is a relatively common one: the use of topical steroids used to treat eczema.
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Known as topical steroid withdrawal (TSW), Sophie’s condition is a rare and debilitating reaction occurring from long-term use of steroid creams.
It has left her “like a crispy fried chicken”, shedding masses of skin and in agony for the past two-and-a-half years.
“It has felt like being on fire,” Sophie, a smoking cessation advisor from Peterborough, Cambridgeshire, told Need To Know.
“I would wake up every morning in a pool of my own dead skin that had come away in the night.
“I felt like I had fallen in a bush of stinging nettles or I was sat in a glass of coke covered in hives.
“My whole body from head to toe was itching – it wasn’t surface level, it was deep to my bones.
“I dug so deep into my skin to suppress the itch, my nail beds were so sore.
“My skin was turning purple in some areas, and there was always blood coming from somewhere.”
Sophie had first been prescribed steroid creams in childhood to treat patches of itchy eczema in the folds and creases of her legs and arms.
She said: “It was never too much bother, and the steroids worked wonders at the time and the itching was minimal.”
She consistently used the creams from then on – not knowing that prolonged use could lead to serious adverse effects.
While she recalls being warned that steroids could “thin” the skin, Sophie wasn’t particularly concerned, especially given the regular prescriptions she was given.
But in the last three years – after 25 years of usage – Sophie noticed her face becoming dry and flaky.
A GP believed she had seborrheic dermatitis and recommended anti-dandruff shampoo and another steroid prescription to treat it – but weeks later, the issue escalated, and Sophie erupted in red patches of skin across the top half of her body, and a rash.
She saw another GP, who this time believed it was atopic dermatitis, and again prescribed the steroids and moisture creams – but nothing helped.
As the rash spread, Sophie’s skin began to get increasingly itchy, and she noticed fluid was leaking from the cracks.
A third doctor described it as “severe eczema” and gave her antihistamines and further moisturisers, as well as Protopic, a non-steroid ointment.
Sophie said: “Initially it calmed for a short while, but then it was like a volcano erupted in me – everything returned, but worse.
“I started getting sunburn symptoms – my skin was red hot to the touch, and I was burning like a radiator.
“I’d remove my duvet but would then have shivers immediately, which led to me not sleeping.
“I was in a horrific mess of a cycle.”
By March 2024, it was so bad that Sophie went to A&E, where doctors were stumped as to the cause.
She said: “They were all stood there, scratching their heads, unsure of what to advise.”
She was booked in with dermatology some time later, but in the meantime she researched online and learned of topical steroid withdrawal.
Sophie said: “Everything made sense, every symptom matched mine.”
When the dermatologist recommended an oral steroid, Sophie shared her concerns, and he advised she “taper off” her usage – which she tried, but found that the red patches of skin, the rash and burning itch kept returning.
She was offered various creams and medications, and says she “felt like a human guinea pig”, and was adamant that they were not working.
Finally, she was put forward for phototherapy – where UV light is used to treat skin conditions like eczema – but found this, too, didn’t work.
Sophie said: “It was a disaster because my skin was constantly falling off.
“I was just burning fresh layers of skin.
“My flakes were crusting – I used to refer to myself as a crispy fried chicken.
“It was absolutely not the answer for anyone in the initial stages of TSW – the skin is extremely sensitive, and the skin barrier is weak and compromised.”
She went away to consider further options of more extreme medication – including one that could damage her liver – and her symptoms escalated in the weeks that followed.
Sophie said: “The itching increased to another level or what I can only describe as torture.
“I also started getting spasms – sleeping in bed it got so bad from the shakes and the itching, it would wake me up multiple times a night.”
She was referred to a specialist doctor in April 2025, who finally confirmed that she was experiencing TSW – which Sophie describes as a “huge relief”.
But treatment was still limited, and the sleepless nights and torturous itching had a huge knock-on effect.
Sophie said: “I didn’t have any form of life at this point.
“Luckily I was working four days a week remotely at the time and in the thick of this, and they then supported [me doing] five days at home.
“I struggled to focus. I struggled to live – I was tired, sore, depressed and fed up.
“I felt like a disease was in my body.
“I cried nearly every day.”
She became desperate enough to try the medication that carried risks to her liver, Methotrexate, starting at a low dose in June 2025.
But things took a turn when she discovered a grape-size lump in her breast the following month.
Sophie said: “My heart sank.
“The body struggles to manage immense inflammation after the withdrawal of steroids, causing the lymphatic system to work overtime.
“I didn’t have a full understanding of this [at the time], and my body had this all over, but the lump in my breast was the biggest and didn’t disappear like the rest did.
“I had read of people developing cancer whilst going through TSW or using immunotherapy, so I was absolutely terrified.
“I was extremely worried and my mind was in overdrive.”
Thankfully, a biopsy gave her the all-clear, and she was later told it had been caused by her excessive itching.
Sophie took some time off work to deal with her symptoms, and the Methotrexate started to kick in – but the adverse effects of TSW were still “relentless”, including her getting a nail bed infection due to skin trapped under her nails from scratching.
Her skin was shedding at a rapid rate at this point.
Sophie said: “I was hoovering it off the floor daily – the skin was like sand.”
She made the decision to come off of Methotrexate, finding her symptoms once again returning with a vengeance, and while Sophie went on to try another immunosuppressant, two-and-a-half years into TSW, she is still struggling with the effects.
She said: “Everything is still very much an issue for me, and I honestly don’t see a way out anytime soon.
“I’m so tired and sore, and I feel like I’m simply existing not living, in a weird bubble.
“I’ve forgot what normality feels like.
“Even on the manageable days, there’s black clouds lingering of the fear of what tomorrow brings.”
She is currently waiting to go on another medication called nemolizumab, which is specifically designed to target the relentless itch.
In the meantime, Sophie is doing all that she can to raise awareness for TSW – and warn people about what can happen if you use topical steroids without understanding the risks of long-term use, like her.
Following a safety review in 2021 by the Medicines and Healthcare products Regulatory Agency (MHRA) in 2021, TSW became formally recognised in the UK as a clinical phenomenon which can occur after long-term, high-potency or inappropriate use of corticosteroids.
But it is a little-known condition to many – something Sophie is determined to change.
She said: “This is not ‘severe eczema’ – it’s so much more than that, and that’s why I actively try and promote this where I can.
“The real eye-opener for me was the TSW support groups. I joined the main page on Facebook in 2024 and it had 21,000 members.
“It’s now on 25,400, two years on, and that’s just the people that know about the condition and the group.
“The support there, and my determination, is the only thing that has kept me alive.
“The advice and being able to relate and explain your symptoms along with side effects without feeling crazy is everything.
“I will never not talk about this condition – the systems and side effects go way beyond ‘severe eczema’ and people have the right to know this.”
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