A woman has shared how her life was turned upside down after what looked like a small rash turned into unbearable full-body pain and says it’s down to Topical Steroid Withdrawal (TSW), a condition she says is still misunderstood in the UK.
Francesca Tebbutt, 33, from Clunderwen in Wales, first noticed some itchy red patches on her arm in early 2023.
When the irritation didn’t clear, she went to her GP, who prescribed a topical steroid cream, a standard treatment for common skin conditions like eczema or psoriasis.
Initially, the rash faded. But it soon came back, worse than before and spread even further. Over a year, she was prescribed increasingly strong steroid creams and each time, she was stuck in a cycle: a temporary fix followed by an even more aggressive flare-up.
“I was trapped in this vicious cycle: steroid cream, temporary relief, then a flare worse than before,” she says.
‘It felt like my face had been in a fire’
After months of recurring skin problems, Francesca decided to stop using steroid creams in January 2024, hoping her skin might settle down. Instead, things got worse.
She was hit by what she describes as intense burning, flaking, swelling and unbearable itching so much so that basic movements became impossible.
“My wrist and elbow swelled, and I couldn’t fully straighten my arms,” she says. “I couldn’t wear sleeves, even in winter. I was so cold all the time.”
At this point, she even went to A&E, where doctors still couldn’t detect a cause. “It was actually refreshing to hear a doctor say, ‘I don’t know what this is,’ but then they prescribed even stronger steroids,” she says.
She says her skin became so painful, even clothes touching the skin would make it intolerable. (Francesca Tebbutt/SWNS)
Soon after using those creams, Francesca’s symptoms escalated. Her face began to tighten and swell, and she could not move her lips or eat properly.
“It felt like my face had been in a fire,” she says. “I couldn’t even open my mouth wide enough to eat an apple. I couldn’t move my lips.”
She describes waking up each morning with her lips “crusted together”, saying, “It was painful just to yawn or to brush my teeth.”
I couldn’t even open my mouth wide enough to eat an apple. I couldn’t move my lips.
‘The itching was constant; I’d be up at 3am’
As her skin flared repeatedly, Francesca says daily life became a nightmare. “I couldn’t use a pen for two months,” she says. “Driving home from work, I’d be crying, unbearably scratching. My car was covered in skin flakes.”
Some mornings, she says she would wake up and feel like she hadn’t slept at all. “The itching was constant; I’d be up at 3am, pacing around the house, just scratching.”
Despite regular visits to doctors and dermatologists, she says no one mentioned the possibility of Topical Steroid Withdrawal – a condition she only discovered after a year and a half of desperate Googling and scrolling to find anything similar to her symptoms.
“I just hid away, I was so embarrassed,” she says. “I couldn’t believe no one had even mentioned TSW as a possibility when I discovered it.”
A turning point
Francesca was eventually diagnosed with Topical Steroid Withdrawal by a private clinic. She began Cold Atmospheric Plasma (CAP) therapy, a non-invasive treatment that helps reduce inflammation and rebuild the skin’s barrier.
But with the therapy only available privately, she launched a GoFundMe to help cover the cost of treatment and bandages and to start rebuilding her life.
“I was so nervous to put my story out there,” she says. “But I had hit rock bottom. I just knew I needed to try.”
The response was immediate. In just a few days, Francesca raised enough for her first few CAP therapy sessions and says she’s already noticed improvements.
She says she hid away because she was so embarrassed about how her skin looked. (Francesca Tebbutt/SWNS)
“People have been so generous, I’m lost for words,” she says. “I’m still bandaging myself every night, but things are starting to change.”
Now, she hopes her story can raise awareness for others stuck in the same steroid-use cycle with no answers.
“I had no idea this even existed,” she says. “But now people know what’s happening – and I’m not hiding anymore.”
She says one of the hardest parts is that TSW still isn’t widely recognised. “I’ve spoken to many doctors who had never heard of it. I just want people to be informed, to know what this might be before it gets so bad.”
Francesca still has difficult days but is determined to keep speaking up. “In this hell I’ve been living, the support has been a light for me.”
Eventually, she discovered Topical Steroid Withdrawal (TSW), which she says changed her life. (Francesca Tebbutt/SWNS)
What is Topical Steroid Withdrawal (TSW)?
Topical Steroid Withdrawal (TSW), sometimes called Red Skin syndrome (RSS), is a condition that can develop after using strong steroid creams for a long time, especially over large areas of the body or on a daily basis.
The National Eczema Society says people going through TSW may notice symptoms like:
It can feel incredibly painful and make even simple tasks difficult.
Currently, there’s no standard approach to managing TSW, which can make it even harder to get support. If you think you might be affected, you can speak to your GP and ask for a referral to a dermatologist who’s familiar with the condition.
Additional reporting by SWNS
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