A 20-year-old student said she would “do anything” to restore her childhood eczema, after suspected topical steroid withdrawal (TSW) had made her skin so painful that she had to quit college.
Bethany Gamble in Birmingham has used topical corticosteroid cream since he was two years old to treat eczema on the face and body.
Although the cream initially relieved her symptoms, their effects decreased as she got older, and Bethany began to experience extreme bursts, described as burning itch “deep inside of her heart”, “sourcing” wounds and hairs that caused her to shaved her head.
Debilitating symptoms including insomnia and shaking force her to drop out of school in 2023.
Gamble believes that after discovering other people with similar experience on Tiktok, she suffers from TSW, an extreme response to prolonged steroid cream use.
But while Bethany firmly believed that this was the cause of her pain, the doctor refused to formally diagnose her, saying that the condition was just extreme eczema.
Bethany says she struggles to maintain eczema as she gets older (Collection/PA Real Life)
She recently joined a group of TSW patients to provide a petition to Downing Street, calling on the medical community to “recognize” the situation – experts say there is an urgent need for high-quality research.”
“It burns a lot and it feels like your skin is on fire, like hundreds of pieces of glass sticking to your skin,” Bethany said.
“I will do everything I can to get my eczema back up – I’d rather have my original eczema for the rest of my life than a day.
“Almost everyone in the medical field will admit this, and only a few people in the country will choose.
“I just love diagnosis, I’d love to hear it, I’d love to be told that I actually have TSW.”
Bethany said she has been applying topical corticosteroid cream to her skin in the best part of 17 years to alleviate the eczema symptoms of her “itritic” and “bleeding”.
“Creams have different abilities and advantages, and as they age, they gradually stop working until they give you stronger people,” she said.
She added that she was eventually prescribed oral steroids because she had reached the “top of the ladder.”
Bethany
Bethany said she worked hard to maintain eczema as she got older because of the reduced effectiveness of the drug, but her symptoms became worse and worse by the time she turned 18 in 2022.
She suddenly struggled with burning, inflamed and “bright red” skin, “a lot of oozing out” and feeling very itchy, “deep inside” and hair loss until she finally shaves it off.
“Eczema doesn't have these symptoms…I know there has to be a problem, and even my mom said eczema doesn't make you bedridden,” she said.
Bethany also experienced extreme insomnia due to discomfort because she “didn’t know what TSW is at the moment.”
Eventually, she had to quit the Contemporary Conservatory of Birmingham in May 2023, where she was studying for a degree in music production.
“I'm sorry, I haven't completed my degree. I don't think I'll go back when I don't need to go to work,” she added.
Bethany says she will “do anything to get my eczema back” (collect/PA real life)
Bethany felt “lonely” and “isolated” and struggled with his symptoms, desperately seeking a diagnosis.
She stumbled upon TSW on Tiktok and felt herself resonating with many others on the platform – the TSW tag has over a billion views here.
“I’ve gone through a lot of research, talked to different people and concluded that my own diagnosis,” she said.
Bethany said she was told she had extreme eczema.
“When I gave it to my doctor, they would say TSW was false or not-existent – they would just say it was eczema,” she said.
“Even if they do agree with me, I don’t think they even allow them to diagnose because TSW has no diagnostic criteria; this is not in the medical world yet.”
Bethany is still struggling with this situation, taking immunosuppressants since September 2023 in an attempt to avoid symptoms.
“I've been using steroid creams all my life, so it's hard to say how long I'll go through – I definitely haven't.”
Bethany says her skin “burns a lot” (collect/PA real life)
Bethany called on the medical community to “recognize” the situation and participated in the annual parade in central London with others who suspected they had TSW.
The organization issued a petition to Downing Street on March 29 asking the government to review the prescribed procedures for local corticosteroids.
“The community is trying to push it to existence — we want people to know it is real,” Bethany said.
A joint statement from the National Eczema Society, the UK Dermatology Care Group and the UK Dermatologist Association acknowledges that high-quality research into this condition is urgently needed.
While it says subjective corticosteroids are a safe and effective treatment for many people, and most side effects are well known, a set of side effects called TSW are often misunderstood.
The statement also said there are many challenges in understanding and managing TSW, and the lack of a clear definition of healthcare may make it difficult for healthcare professionals to talk to people experiencing these reactions.
According to the NHS website, people who use topical corticosteroids for a long time should talk to their doctor to review their treatment and may be advised to stop gradually to avoid withdrawal reactions.
Those who stop using topical corticosteroids after prolonged continuous use of topical corticosteroids (usually for more than 12 months in adults) may experience withdrawal reactions, sometimes severe.
