A Jersey woman, Elsie-May Baker, is sharing her journey with Topical Steroid Withdrawal (TSW) to highlight the challenges faced by those experiencing the condition.
Baker, who has used topical steroids for eczema since childhood, recently discontinued the creams after they became ineffective. Since then, she reports experiencing a severe reaction, describing the process as “pretty horrific and very brutal” with ongoing nerve pain. She has been posting videos on social media to raise awareness and advocate for more support for TSW patients.
“If I’d known this information a couple of years ago, I might not be in this situation,” she said. “I just don’t want others to go through it.” Her first video received 150 messages, highlighting the scale of the issue and the demand for support, which she’s found challenging to manage.
Leading professional bodies, including the National Eczema Society, the British Dermatological Nursing Group, and the British Association of Dermatologists, acknowledge TSW and recognise the pressing need for comprehensive research.
Professor Celia Moss, a retired Consultant Dermatologist and chair of the Medical Advisory Board at the National Eczema Society, noted that discontinuing topical steroids after extended use can lead to intense flare-ups. “If it’s a true TSW reaction, it’s worse than before,” she explained. Moss emphasised efforts to develop clearer definitions and guidelines to assist both patients and doctors in managing TSW.
In response to calls for better support for TSW patients in Jersey, a Health and Community Services spokesperson advised consulting a clinician before making any changes to medication. They also underscored the importance of clinicians discussing potential side effects and the risks of abruptly stopping corticosteroids with patients.