by A woman has announced how her life was turned upside down after a small rash has been transformed into unbearable full body pain, and says that it is due to the topical steroid approval (TSW), a state that she says is still misunderstood in Great Britain.
Francesca Tebbutt, 33, from Clunderwen in Wales, first noticed some itchy red spots on her arm in early 2023.
When the irritation was not clear, she went to her family doctor, who had prescribed a topical steroid cream, a standard treatment for frequent skin diseases such as eczema or psoriasis.
At the beginning the rash faded. But it soon came back, worse than before and spread further. For over a year, her increasingly strong steroid cream was prescribed and every time she stuck in a cycle: a temporary solution, followed by an even more aggressive flare.
“I was caught in this vicious circle: steroid cream, temporary relief, then worse than before,” she says.
“It felt like my face had been in a fire”
After months of recurring skin problems, Francesca decided to hire steroid cremes in January 2024 in the hope that her skin could settle. Instead, things got worse.
It was hit by what she describes as an intensive burning, peeling, swelling and unbearable itching, so that basic movements became impossible.
“My wrist and elbows are swollen and I couldn’t completely straighten my arms,” she says. “I couldn’t wear sleeves even in winter. I was so cold all the time.”
At that point, she even went to A&E, where doctors still couldn’t see any cause. “It was actually refreshing to hear, as a doctor said: ‘I don’t know what that is’, but then you have prescribed even stronger steroids,” she says.
Soon after using these creams, Francesca’s symptoms escalated. Her face began to tighten and threshold, and she couldn’t move her lips or eat properly.
“It felt like my face was in a fire,” she says. “I couldn’t even open my mouth far enough to eat an apple. I couldn’t move my lips.”
Every morning she describes “crust up” with her lips and said: “It was painful to just yawn or brush my teeth.”
I couldn’t even open my mouth far enough to eat an apple. I couldn’t move my lips.
‘The itching was constant; I would be up at 3 a.m.
When her skin flared up repeatedly, Francesca said that daily life has become a nightmare. “I couldn’t use a pen for two months,” she says. “I drove home from work and would cry, scratch unbearably. My car was covered with skin flakes.”
In some morning she says she would wake up and feel that she would not have slept at all. “The itching was constant; I would be up at 3 a.m. and went around the house and just scratched.”
Despite regular visits to doctors and dermatologists, she said that nobody mentioned the possibility of a topical steroid deprivation – an illness that she only discovered after a year and a half of desperate googling and scrolling to find something similar to her symptoms.
“I just hid myself, it was so embarrassed,” she says. “I couldn’t believe that nobody mentioned TSW as a possibility when I discovered it.”
A turning point
In Francesca, a topical steroid withdrawal was finally diagnosed by a private clinic. It began a cold atmospheric plasma therapy (CAP), a non-invasive treatment that helps to reduce inflammation and rebuild the skin barrier.
But since the therapy is only available privately, she started a gofundme to cover the cost of treatment and bandages and to rebuild her life.
“I was so nervous to bring my story out there,” she says. “But I had reached the low point. I only knew that I had to try it.”
The answer was immediately. In just a few days, Francesca raised enough for her first CAP therapy meetings and says she has already noticed improvements.
“People were so generous, I’m lost for words,” she says. “I still connect every evening, but things change.”
Now she hopes that her story can raise awareness of others who are in the same steroid use cycle without answers.
“I had no idea that this existed at all,” she says. “But now people know what happens – and I’m no longer hiding.”
She says one of the most difficult parts is that TSW is still not generally recognized. “I spoke to many doctors who had never heard of it. I just want people to be informed to know what this could be before it gets so bad.”
Francesca still has difficult days, but is determined to continue speaking. “In this hell in which I lived, the support for me was a light.”
What is the topical steroid approval (TSW)?
The topical steroid train (TSW), sometimes referred to as Red Skin syndrome (RSS), is an illness that can develop for a long time after using strong steroid creams, especially through large areas of the body or daily.
The National Eczema Society says that people who go through TSW are symptoms such as:
It can feel incredibly painful and even make simple tasks more difficult.
There is currently no standard approach for the management of TSW, which can make it even more difficult to receive support. If you believe that you are affected, you can speak to your family doctor and ask a transfer to a dermatologist who is familiar with the disease.
Additional reporting of SWNS
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