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Woman Shares 'ordeal' Of Steroid Cream Withdrawal

Elsie-May Baker said she had struggled with side affects since she stopped using topical steroid treatments for her eczema [BBC]

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A Jersey woman has been sharing her experience of Topical Steroid Withdrawal (TSW) to raise awareness of the difficulties that can be faced.

Elsie-May Baker has been using topical steroids since she was a young girl to treat her eczema.

But she recently stopped using the creams because they were no longer working and said she has suffered a severe reaction ever since.

Ms Baker said the experience had been "pretty horrific and very brutal" and she had constant nerve pain.

Ms Baker has been sharing videos on social media to show the extent of the problem and to call for more support for patients like her.

"If I'd have known this information a couple of years ago I might not be in this mess. I just don't want other people to have to go through it," she said.

"The first video I shared, I think 150 people messaged me and it's been hard to keep up with helping everybody," she added.

The National Eczema Society, the British Dermatological Nursing Group, and the British Association of Dermatologists and other professional bodies acknowledge TSW and the urgent need for high-quality research into the condition.

'Producing guidelines'

Professor Celia Moss, a retired Consultant Dermatologist and chair of the Medical Advisory Board at the National Eczema Society, said reactions could be severe.

She said eczema "comes back very badly" when people stop sing topical steroids after a long period of time.

"If it's a true TSW reaction, it's worse than it was before," she said.

Ms Moss added: "We're working towards defining the condition more clearly; producing guidelines for doctors and for patients, but at the moment I entirely understand the difficulty that patients have."

The BBC asked Health and Community Services to respond to calls for greater support for patients dealing with TSW in Jersey.

A spokesperson said: "We would strongly urge anyone who wants to make a change to their medication to consult with their clinician first."

They added "When prescribing topical corticosteroids, clinicians should outline potential side effects and warn of the risks of stopping the medication abruptly."

Follow BBC Jersey on X and Facebook. Send your story ideas to channel.Islands@bbc.Co.Uk.

Steroid Cream: Women Send Out Warning After Severe Reactions

Aramidé Onashoga and Bethany Jones are urging others to be aware of risks of steroid cream withdrawal

Two women who had extreme withdrawal reactions after using steroid creams to treat skin conditions are speaking out to warn others of the risks.

Aramidé Onashoga and Bethany Jones, from Kent, are still continuing their recovery, years after stopping topical corticosteroids.

They had Topical Steroid Withdrawal (TSW), and experienced skin shedding, splitting and infections.

The chair of the Dermatology Council said TSW is under-diagnosed.

Aramidé Onashoga experienced swelling, skin shedding and infections

Miss Onashoga, from Chatham, initially started using the cream at university, after comments were made about her eczema.

But when she came off the treatment, parts of her body swelled.

"It was like the top layer of my skin wasn't there. My skin would leak a lot of fluid and I would get repetitive infections," the 31-year-old said.

Bethany Jones, from Tunbridge Wells, used the cream on and off since she was a young child to treat her eczema.

She was prescribed it until 2020, but she came off it after it stopped being effective.

Bethany Jones photographed her physical reactions from coming off the steroid creams over 14 months

She said: "I looked like I was burnt over about 95% of my body.

"My skin was shedding, it was oozing and splitting. I'd move and my skin would tear."

She was unable to leave the house for six months, she said.

According to the NHS, topical corticosteroids are an effective treatment for skin disorders, but withdrawals can "sometimes" be severe.

Dr George Moncrieff said the profession should sympathise with TSW sufferers

Dr George Moncrieff, of the Dermatology Council, said TSW could affect as many as one in 10 patients.

He said: "The profession does need to alert itself to this condition.

"The only thing that seems to calm it down is putting more steroid on, but that makes it even worse in the longer term, so it's a vicious cycle.

"They can go cold turkey, but it can last many months and be pretty horrible."

Bethany Jones said her skin would rip and tear, and then began to peel away

Both women are now managing their conditions holistically.

Miss Onashoga said: "The first point of treatment should be allergy testing to know and understand our triggers."

Miss Jones now avoids alcohol, gluten, certain deodorants and washing powders to avoid flare ups. She uses emollients, takes supplements and has a water filter on her shower.

She added: "I would much rather have lived with my eczema symptoms for a lifetime than gone through this."

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