Tilly Hartley has suffered with eczema flare ups for years but her skin condition got far worse when she stopped using steriod creams. She now fears she is part of a growing group who believe they have Topical Steroid Withdrawal (TSW)
“Before I suffered with my skin I never really struggled with my mental health.” Tilly Hartley, 25, fears she is part of a growing community with Topical Steroid Withdrawal (TSW) after using steriod creams to clear eczema and dry skin condition flare ups.
Tilly, from Putney, said she suffered with the occasional eczema flare up for years and whenever she did she would use a steroid cream to help with the symptoms. While the cream would work and help clear the eczema very quickly, like many sufferers Tilly found the condition would keep coming back with her doctor putting the steroid cream she used on repeat prescription.
NHS guidelines state that these creams shouldn’t be placed on a repeat prescription without regular and planned intervention, something which she says she never had. Therefore she got into a routine of picking up more as and when she needed it.
Then things changed. She told MyLondon: “About two years ago, I had eczema on my hands and the cream just wasn’t working the same. I told my boyfriend and he suggested I see what happens if I stopped using the cream for a bit so I came off of them for like a little challenge and from there things just got worse and worse.
“I never put steroid creams on my face. I literally only put them on my hands and my feet but my face just went really kind of tight, like sunburn. I was like, ‘this feels really weird’ and it felt like I was having an allergic reaction – my moisturiser that I normally use has got nothing in it but it started burning my skin.”
From there things escalated: “I’d wake up in the morning and my whole face would be peeling off and that would kind of happen every single day then I would get a rash on my body and then in November, I’m not sure what even caused this, but, my skin got so much worse.
“My whole body was so unstable that I couldn’t tolerate anything, my whole body was shedding at this point, and even putting on moisturiser kind of made it feel alright for like 10 minutes, and then it would dry out again, it was just so gross.
“I would wake up in the morning and be covered in dead skin and have to hoover my whole bed and like my floor, which I still have to do now.
“It got so bad that I that had to move back to my parents so that they could look after me, whilst there we began to research what it could be but we still weren’t really sure whether it was Topical Steroid Withdrawal (TSW) or severe eczema all of a sudden. This left us really confused and the doctors didn’t really know either.”
She was referred to a dermatologist in August but the earliest appointment that they could provide was February. Coupled with this she said an appointment with a private dermatologist was £340 for a 20 minute session. In December she moved back to London as she managed to get a private appointment through the NHS.
Tilly added: “I was really self-conscious because I literally looked like a raccoon and I had to travel an hour to get there… people were looking at me and stuff and when I got in there I was so emotional as I’d been waiting for this appointment for so long that I started crying.”
The dermatologist prescribed Tilly with an even stronger steroid cream to be used on her whole body to which she refused. He also denied that she had TSW as he said this only occurs when you cover yourself in a steroid cream over an extensive period which she had not done.
She was then recommended to go on methotrexate, which is an immunosuppressant. She admits “I was a bit hesitant because it’s got loads of side effects. It’s basically a small dose of a cancer drug. So it’s not good for you at all and it kind of helped a teeny bit but not enough to stay on it.
“Earlier this year I had a holiday to India and the Maldives and it was the first time with my whole family, and I think they were quite shocked because I was crying every day, having attacks, and I literally couldn’t move. It was really painful.”
Things then got even worse: “I was at my boyfriend’s family’s house as it was his brother’s 13th birthday and my skin and my whole body was like leaking liquid which was so disgusting…I was bright red and I felt so unwell and I felt like I had the flu and we had to come home early because I was really unwell.”
It has also put a strain on her relationship with her boyfriend as well as her career. She added: “It’s been quite tough in our relationship because we struggle to go out and do anything and I don’t really want to, I spend a lot of time in the bath and I haven’t been drinking and he’s been doing all the housework as well as this.
“I feel like I have just about managed to do the bare minimum with work – I haven’t even been to the office in over seven months.”
Topical Steroid Withdrawal (TSW) was recognised by the MHRA, the UK’s medicine watchdog in 2021. Tilly believes she does have TSW but says the most difficult part is the lack of awareness and understanding of the condition.
She is part of a growing group of people who believe they have the condition with a lot of people all experiencing similar debilitating symptoms with some taking to TikTok to publicise their situations, however, some have received negative comments with denials that TSW even exists.
A social media page has now been set up under the handle @tswtogether where organisers create meet-ups for people who believe they are affected by the condition.
As for Tilly she hopes after her new dermatologist appointment she has approaching gets her some answers and solutions as to what is causing her debilitating skin condition.
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