People left with oozing pores and burning skin turn to TikTok for help after NHS steroid hell
Video and words by George Hancorn and Rebecca Fraser, ITV News' Here's the Story
Steroid medication prescribed on the NHS that has left patients suffering severe and debilitating skin problems “wouldn't be approved today”, a top doctor has warned.
TikTokers have been posting widely about their extreme reactions to stopping the medication, a process known as topical steroid withdrawal, with the hashtag #TSW racking up more than one billion views.
People have described living with burning skin, open, oozing pores and extreme itching after withdrawing from medication used to treat conditions like eczema and psoriasis.
Sufferers have told ITV News it has ruined their lives, forced them into hospital and left them feeling suicidal, and have accused GPs of “gaslighting” them.
Their claims are echoed by a leading doctor who has said the medical profession “has not wanted to hear about this”.
Dr George Moncrieff, a semi-retired GP who has a special interest in dermatology, told ITV News: "They've not wanted to address it. It's much easier to blame your patients than to open your eyes to the other possibilities.
"I think we're beginning as a profession to acknowledge that there is something going on here, but it's taking a lot of effort by the topical steroid withdrawal lobbies to try and get people just to begin to move their position."
He added: “If steroids were discovered today… I don’t think they'd receive a licence.”
What is topical steroid withdrawal and why can its effects be so severe?
Topical steroids, also know as corticosteroids, can be in the form of gels, creams and aerosol sprays and can vary in strength.
Their regular use sees the body become more dependent on them and can lead to severe consequences as you withdraw.
More than eight million UK children and adults thought to suffer from atopic eczema alone.
"I wasn't able to urinate and I couldn't shower", says Jack Taylor, a 30-year-old from Bolton.
"For me, it started with a small piece of dry skin the size of my nail. Doctors prescribed hydrocortisone, but it kept coming back, so I was given more. And more. And more.
"I kept getting it prescribed until after about three of four months I was like, I'm done. Things got so bad I had to go to the hospital because I couldn't use the toilet."
Nerys Phillips has also suffered dramatically due to adverse reactions from steroid products."This has ruined my life," she told ITV News. "Completely ruined it. I was verging on suicidal."
Nerys, who is from the Orkney Islands, was recently re-admitted to hospital following complications from topical steroid withdrawal.
"I thought I was dying, honestly, in the early days last year when I couldn't get off the steroid cream because this skin rash was coming up, I thought I was dying."
What did each of the people we spoke to have in common?
They used TikTok to help self-diagnose and reach out to other steroid withdrawal suffers, who claimed doctors weren't listening.
Jack said he felt let down by the advice from his GP, who'd urged him to continue on the course.
"All the time you're told 'this is in your head'," he said. "It is the definition of gaslighting.
"It is so scary going against doctor's advice."
While searches for the hashtag #TSW have soared on the platform, millions have shared their stories of how topical steroid withdrawal has impacted them.
The people ITV News spoke to have praised TikTok for helping raise awareness of the issue.
Where are we on topical steroid withdrawal in 2023?
Figures given to ITV News by the National Eczema Society (NES) revealed that between 2021-2022 an estimated 10.5 million tubes of topical corticosteroids were prescribed to patients in England.
But with people getting theirs hand on products over the counter, experts are concerned the numbers prescribed could become much higher.
As the leading charity for those impacted by eczema, the NES is calling on the medicines regulator to introduce clearer strength labelling of topical steroids to support the safe and effective use of the medicines.
This would make products a bit like displaying SPF in sunscreen.
Campaigners also want pharmaceutical companies to adopt clear strength labelling on creams and ointments that contain steroid medication.
The NES told ITV News it had written to the Medicines and Healthcare Products Regulatory Agency (MHRA) back in May, but still hadn't received a formal response.
The MHRA previously reviewed evidence on topical steroids back in 2019 and added information about some of the risks to patient information leaflets.
But campaigners want the body to go even further and are urging GPs to change their advice.
After his own ordeal of going in and out of hospital, sufferer Jack had a more direct message.
"Get your head out of a textbook, stop prescribing steroids as a cheap fix", he told ITV News.
"No one believed me that these creams can worsen topical steroid withdrawal. Thank God for TikTok because it truly saved me."
Asked to respond to the claims of sufferers by ITV News, the MHRA said: “When used correctly, topical steroids are safe and highly effective treatments for skin conditions such as eczema, psoriasis, and atopic dermatitis.
“To ensure that patients can use these products safely and effectively, we continue to review the safety of topical steroids and options to minimise risks, including measures to improve understanding of the safe use of these products."
For help and advice, visit the National Eczema Society
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