Woman ‘stripped of life’ while suffering with Topical steroid withdrawal for six months
A woman who cancelled her wedding after suffering severe withdrawal symptoms from topical steroids is calling for more awareness of the condition.
Six months ago, Nicola Jones, from Anglesey, began to react badly to her steroid creams, after using them on and off for over 15 years to treat her eczema.
“The rash started to spread down my neck, and I only ever used to suffer from eczema on my top lip," Ms Jones told S4C’s Y Byd ar Bedwar programme.
The 31-year-old never experienced any skin reactions like this before, but in December last year, she turned to steroid creams as she always did to treat a flare up.
However this time, her symptoms worsened, and after researching online, she discovered that this could be a sign that her skin is addicted to the cream, and was suffering from TSW - Topical Steroid Withdrawal.
One in 10 adults and one in five children are affected by eczema, and topical corticosteroids are safe and effective way of treating it, as well as many other skin conditions.
However, there is growing evidence of topical steroid withdrawal reactions if they are used continuously or for prolonged periods.
Some symptoms can include, red rashes, skin oozing, skin peeling, intense itching, swollen lymph nodes, insomnia and affect on mood.
Nicola decided to stop using the steroid creams in the hope her skin would improve.
“It was either go on stronger steroids or carry on letting the body heal”.
She said: “It’s hell. I wouldn’t wish it on anybody. It doesn’t just affect you physically, it affects you mentally because you’re in so much pain, you don’t know when it’s going to stop."
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Nicola is a self-employed beautician, but the pain was so unbearable by December last year that she decided to stop working.
Her and her childhood sweetheart also put their wedding plans on hold.
Only in 2021 did the National Eczema Society and the British Association of Dermatologists publish guidelines recognising TSW for the first time. This has led some patients to feel that there is not enough information or awareness of the condition.
Nicola explained: “I’ve had to do a lot of my own research because one doctor I’ve seen. He’d never seen a patient with it, and the other doctor had never even heard of it".
Dermatologist, Dr Alia Ahmed, is an expert on TSW. She lectures on the condition and is very active on social media.
Her hope is to educate more healthcare professionals about these possible withdrawal symptoms.
She added: “It’s not unusual for us to now find conditions which we weren’t even taught about. And if something hasn’t got a lot of evidence around it at the moment, that means that people are a bit more reluctant to accept it.”
Dr Alia Ahmed explained: “There is a negativity around people’s experiences with doctors and I think that can drive the reluctance. However we still need education and understanding in that area so that patients can learn from us and we can learn from them aswell.”
In May, the National Eczema Society (NES) called on the MHRA to introduce clearer strength labelling for topical steroid tubes, packaging and patient information leaflets.
In a survey by the NES, 95% of respondents agreed with these suggestions.
The creams come in various strengths, and they hope clearer potency labelling will help improve patient understanding and confidence in these widely-used medicines.
Dr Alison Cave, MHRA Chief Safety Officer said: “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.
“We are seeking expert advice from an Expert Advisory Group of the Commission on Human Medicines on the concerns raised on labelling and will continue to work collaboratively with charities and our partner organisations as needed.
Watch the full Y Byd ar Bedwar programme on Monday, 26 June 2023, on S4C or iPlayer at 8pm. English subtitles available.
If you have been affected by anything in this article, help and advice can be found here.