Lily Holden, a 30-year-old from Bristol, has shared her harrowing experience with a little-known condition known as topical steroid withdrawal (TSW) after a decade of using steroid creams. What began as a small rash on her neck in 2014 escalated into a painful ordeal that left her battling severe symptoms and ultimately seeking to raise awareness about the condition.
In 2014, Holden returned from an outdoor adventure retreat and noticed a small rash on her neck. Initially dismissed as a minor issue, she was prescribed a topical steroid cream. Over the next ten years, she experienced recurring rashes and was intermittently prescribed steroid creams. By January 2023, her face erupted in circular patches of rashes, prompting a diagnosis of perioral dermatitis, a common skin condition characterized by a red, bumpy rash around the mouth.
“My doctor suggested that repeated use of steroid cream near my face could be the cause,” Holden explained. Ironically, she was given another steroid cream to manage the new diagnosis. Alarm bells rang when she noticed that new areas of her skin were becoming affected, leading her to search for answers online.
Holden discovered TSW on TikTok, where users shared their similar experiences. The condition is believed to be an extreme withdrawal response to long-term use of topical steroids, resulting in inflammation, intense itching, and weeping skin. Recognizing the alarming correlation between her symptoms and those described by others, she consulted her doctor about TSW, but was met with skepticism.
Despite the challenges, she made the pivotal decision to stop using all medicated creams in June 2023. This choice initiated a painful withdrawal process. “I noticed finger-like marks around my mouth, and eventually lost skin, leaving me with open, raw wounds,” she recalled. The inflammation worsened, leading to repeated staph infections due to a compromised skin barrier.
“I didn’t even recognize myself,” she said. “The itching was an unbearable, never-ending agony.” During this period, Holden felt isolated, unable to go outside or engage in daily activities. “I went days without sleeping; the water felt like acid on my skin,” she noted, expressing how the ordeal affected her mental health.
Through the support of her family and friends, along with the online community she found on TikTok, Holden began to see progress. By October 2023, her skin had improved significantly after she sought a combination of therapies, including supplements and advice from a homeopath. Today, she describes her complexion as “completely fine,” but emphasizes that there is “not a one size fits all” approach to TSW recovery.
Holden’s journey has ignited a passion for raising awareness about TSW, advocating for recognition from the medical community. “One of the worst parts is not feeling seen or listened to,” she said. “People need to be careful with skin problems; it’s not simply a matter of applying a cream.”
The National Eczema Society highlights TSW as a severe reaction that can occur after long-term use of topical steroids. Symptoms may include red skin, swollen glands, intense itching, and excessive flaking. While topical steroids are generally safe for short-term use, there is a growing recognition of the need for more research into TSW and its effects.
In a joint statement, the National Eczema Society, the British Dermatological Nursing Group, and the British Association of Dermatologists acknowledged the urgent need for high-quality research on TSW. They noted that while most side effects of topical steroids are well-documented, TSW is less understood and often overlooked in clinical practice.
Holden’s message to others suffering from similar conditions is one of hope: “You’re not alone; you’ll get through this. You are, and always will be, more important than your skin.” Her story serves as a powerful reminder of the resilience of the human spirit and the importance of advocacy in health care.
