A young woman who decided to ditch her skin cream prescribed by doctors has revealed how she experienced extreme withdrawal symptoms of depression, anxiety and the permanent feeling of her skin being sunburnt.
For more the two decades, Eve, 22, from Cambridgeshire, was given topical steroids to treat her eczema, as advised by doctors and skin experts.
She was progressively prescribed stronger steroid creams until she became concerned when the highest potency cream no longer seemed to work.
But when Eve decided to go cold turkey and come off the creams, she ended up in A&E after suffering from an adrenal crisis – the body’s extreme lack of cortisol due to the reliance on steroid creams – which led to anxiety, depression and severe pain.
After doing some research, she realised she was suffering from Topical Steroid Withdrawal (TSW), saying: ‘My skin was dry, it was so painful. I’ve never felt pain like that’.
Eve, 22, from Cambridgeshire, was left in extreme pain and suffering from insomnia and depression after she decided to ditch her skin cream prescribed by doctors
She told MyLondon: ‘I’d been using creams since the age of two and on the strongest cream since 16. I had it on a repeat prescription.
‘I could pick one up whenever I wanted. I was putting them all over my body, wasn’t washing my hands afterwards.
‘I didn’t realise you’re not supposed to use them long-term, no one ever told me, they just said it might thin my skin.
‘I was probably 18 or 19 when I started noticing that I was flaring up but it didn’t look like eczema, more like an allergic reaction.
Pictured left after a flare up, Eve said she ended up in A&E after suffering an adrenal crisis, which is the body’s extreme lack of cortisol due to the reliance on steroid creams
‘My face would look burnt and the scabs would crumble off my face. So I’d put on the steroids again and keep using them.’
She said: ‘It felt like any clothes touching my skin were going to rip it off.
‘I was shivering, I couldn’t regulate my temperature, I was head to toe covered in an awful rash.’ To combat the condition, the doctors once again prescribed her steroid creams.
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The 22-year-old lived in Camden before moving home to her parents in Cambridgeshire while she recovers.
But she hopes to move back to Camden once her skin improves.
Now, Eve is determined to heal from the damage naturally by forcing her body to be less reliant on the creams, despite the fact she knew it could be ‘two years of hell’.
After coming off the steroids last summer, she has seen some improvements – but still deals with often debilitating symptoms every day – similar to her ordeal in A&E.
She said: ‘I get these things called zingers.
‘It’s like your nerve endings zapping you. It gives you a tinge all over your body.
‘It feels like being sunburnt all the time.
‘I get really bad insomnia.
‘I probably sleep for three hours a night. Coupled with itching at night.
‘From 11 – 1am, I am itchy all over. Like a bone deep itch. Nothing will satisfy it.’
In a bid to raise awareness of Topical Steroid Withdrawal (TSW) one evening Eve posted a video on TikTok.
By the morning, she woke up to thousands of views and comments from others – praising her for openly speaking about her skin struggles.
She added: ‘I try and see the positive but there are nights where you just cry and wish you looked back to normal.
‘I know other people [TSW sufferers] get so so depressed and so down.
‘People think, what’s the point if I look like this?
‘I want to show people, via my videos, that you can still have a life. Things do get better.’
On her videos Eve shares the activities she is looking forward to once she feels better.
These include wearing make-up, being able to drink alcohol (the histamine in alcohol means it would flare up her skin) and to ‘not have to hoover [her] sheets every day’ due to the flaking skin.
She said: ‘I’ve been so overwhelmed with the response to my videos, its been nothing but kindness. There is no single negative comment on any of my videos.
‘It’s so wild that so many people are going through this and yet nobody knows about the condition.’ The National Eczema Society said TSW is a complex condition and called for more research to be done, as it is not well understood.
As with change to medications, they advise speaking to your doctor before stopping steroid creams.
Dr Mark Hudson-Peacock, a consultant dermatologist agreed that the condition is complex, and should be dealt with on a case by case basis.
He said: ‘I always urge those with eczema to moisturise significantly before applying steroids at least half an hour beforehand.
‘And to apply steroids to affected, symptomatic areas. ‘And then as it comes under control you can reduce how often you put it on, or step down to a weaker cream.
‘Its all about working with patient from what’s going to work for them – it can be difficult to find the right “recipe”.’
Source: Daily Mail
