Woman shares 'ordeal' of steroid cream withdrawal

Elise-May looks at the camera while sitting on a grey sofa. She is wearing a white pyjama top with white and black striped pyjama bottom. She has dark red patches on her face, neck and arms where the skin has reacted badly to coming off the creams.
Elsie-May Baker said she had struggled with side affects since she stopped using topical steroid treatments for her eczema [BBC]

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.”

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