A woman from Jersey is sharing her personal battle with Topical Steroid Withdrawal (TSW) in a bid to raise awareness of the challenges faced by individuals affected by this condition.
Elsie-May Baker, who has struggled with eczema since childhood, had been using topical steroids for years to manage the skin condition. However, after the creams ceased to be effective, she decided to stop using them—only to experience severe withdrawal symptoms.
The 26-year-old described the ordeal as “horrific and brutal,” revealing that she has been dealing with constant nerve pain since ceasing the use of the steroids. In an effort to educate others about her experience, Baker has taken to social media to share videos documenting the intensity of her symptoms, as well as calling for greater support for patients facing similar struggles.
“If I had known about this condition a couple of years ago, I might not be in this situation now. I just don’t want anyone else to go through it,” she said in one of her videos. Baker noted that after sharing her story online, she received an outpouring of support, with around 150 people reaching out to her for advice. She added that it has been overwhelming trying to help everyone who has contacted her.
Topical Steroid Withdrawal, a condition recognized by the National Eczema Society, the British Dermatological Nursing Group, and the British Association of Dermatologists, remains poorly understood. These professional organizations stress the need for further research into TSW and the urgent development of clear treatment guidelines.
Severe Reactions and Ongoing Efforts
Professor Celia Moss, a retired consultant dermatologist and chair of the Medical Advisory Board at the National Eczema Society, confirmed that the withdrawal symptoms can be severe. She explained that many people experience a significant worsening of eczema once they stop using topical steroids after prolonged use. In some cases, the withdrawal symptoms are worse than the initial skin condition itself.
“We’re working towards defining the condition more clearly and producing guidelines for both doctors and patients. However, I completely understand the challenges that patients face in the meantime,” said Professor Moss.
The BBC reached out to Health and Community Services in Jersey for a response regarding the calls for more support for TSW patients. A spokesperson advised anyone considering altering their medication to consult their clinician first and emphasized the importance of understanding the potential side effects of topical steroids.
“When prescribing topical corticosteroids, clinicians should inform patients about the risks of sudden discontinuation and provide guidance on how to safely manage medication adjustments,” the spokesperson said.
Despite the growing awareness and recognition of TSW, many patients like Elsie-May Baker continue to navigate this complex and painful condition, highlighting the need for further research and more effective patient support systems.
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