BIRMINGHAM — A consultant dermatologist at the University of Edinburgh has secured National Eczema Society funding to launch the first UK study into topical steroid withdrawal after widespread patient reports on social media. Sara Brown and Dr Alice Burleigh from the patient group Scratch That have recruited hundreds of participants across the UK for the investigation.

The researchers are analysing symptoms, saliva samples, and skin biopsies to investigate why some people develop topical steroid withdrawal and others do not. Social media posts documenting red, inflamed, peeling skin prompted the research, with videos containing the hashtag TSW on TikTok viewed more than a billion times. "We're seeing patterns in TSW that cannot be explained by what is known about eczema," said Sara Brown, consultant dermatologist.

Topical steroid withdrawal, also known as red skin syndrome, remains under-researched. Some general practitioners and dermatologists struggle to diagnose or treat the condition. About eight million people in the UK have eczema, with steroid creams serving as the first-line treatment for many patients.

At age 18, small patches of eczema in the creases of her elbows and behind her knees began to spread. By the time she turned 20, she was in so much pain she could not get out of bed. She could not feed herself and her mother took time off work to care for her.

As his eczema patches spread across his body, he was unable to go outside, socialise, or study due to pain when moving.

"Patients are stuck between a rock and a hard place," said Andrew Procter, National Eczema Society representative. "We know that steroids work for the many millions who use them. But we also have a condition that at the moment, can't be explained, which is causing real fear - and that is completely understandable. That is why more research is desperately needed."

General practitioners may refer patients with topical steroid withdrawal symptoms to dermatologists for specialist care, but waiting times often exceed one year. For most patients with topical steroid withdrawal, steroid creams are currently the only available treatment option.

Dr Alia Ahmed, a consultant dermatologist at the Royal London Hospital who runs a specialist NHS clinic for people with chronic skin disease, offers psychological support, immunosuppressants, and phototherapy as treatment options. "The psychological impact, as well as the physical effects, is huge," Ahmed said.

Since stopping steroid creams five years ago, her skin has mainly healed but she continues to struggle with mental health issues.