Harriet Williams, 33, has described the severe impact of stopping topical steroid creams she had used for more than 20 years to manage her eczema. She was diagnosed with eczema as a child, and it continues to trigger itchiness across the "majority" of her body's skin. Her parents began administering topical steroids when she was five, following advice from specialist doctors, and she continued for over two decades.
Realisation and decision to stop
Despite her efforts, Harriet kept experiencing "very aggressive" and "random" flare-ups, which could be triggered by dust mites, weather changes, food, and stress. In 2020, she said she realised her steroid use had given her skin a "paper look". So when the UK entered lockdown during the Covid-19 pandemic, she decided to gradually reduce her treatment that April.
By early winter, Harriet said the symptoms of topical steroid withdrawal (TSW) struck "all at once" – including skin and hair loss, heightened itchiness, inability to control her body temperature, and a "thick layer of skin" that developed across her entire body. She said it led to full-body skin hardness and burning sensations. Worse, she said she went "completely bald" and was confined to her house for seven months.
Living with withdrawal and rebounds
Since abandoning topical steroids in April 2020 at the age of 27, Harriet said she has endured several "intense rebounds", including one that left her confined to her home for seven months between September 2023 and March 2024. Despite feeling that stopping was the right choice, she said she is "still on a journey" with managing her eczema.
Harriet, a content creator from London, said: "A topical steroid withdrawal flare-up can be very debilitating. (At its worst) I couldn't actually move my body and I was in constant pain that I couldn't quite describe. It was very hard to regulate my heat, there was a point where I lost all my hair so I was completely bald and my skin was falling off and I had loads of patches. It was just a really horrendous time for me."
Medical perspective and daily challenges
Dr John Akinjolire, an NHS GP working with the travel insurance comparison site PayingTooMuch, said: "Topical steroid withdrawal is a condition that can develop when someone who has been using topical corticosteroids regularly over a prolonged period reduces or stops their use. The timeline for recovery can vary considerably between individuals. Some people may see improvement within months, while for others the process can take significantly longer."
Harriet described her childhood eczema as controlled by a specialist dermatology team that "tried to keep the flare-ups at bay", including episodes where she would scratch herself during sleep until she bled. She described school as a "jungle" where fellow pupils bullied her and likened her to scaly creatures, hurling insults such as "crocodile" and "tortoise" at her. As an adult, strangers would ask why her skin "looked like that" and whether she was a burn victim. "Unfortunately, it is something that I have become accustomed to," Harriet said.
Before giving up steroid treatment at 27, Harriet said she would use it whenever she suffered a flare-up, which could occur every day for a week during particularly severe bouts, or every few months. She experimented with alternatives such as coconut oil and shea butter alongside it, but nothing proved as effective as the steroid cream at reducing the severity of her condition. Explaining her choice, she said: "I was on the highest potency steroids and it got to a point where there is actually nothing else for doctors to prescribe for me. I hit a glass ceiling with it and there wasn't really a next course of action."
Through researching topical steroids online, Harriet discovered TSW and decided to end her treatment, convinced "there had to be more" to her dependency on it. She said her eczema "definitely got worse" before it improved, particularly when she endured multiple "rebounds" months after her condition appeared to have cleared up. She said: "It just came back so aggressively and intensely. The rebounds have probably been the most difficult ones to deal with because I thought I was getting over it and I could maybe have clear skin, or even manage eczema, and then I realised that's not the case."
Managing life and finding community
Harriet says her eczema flare-ups – which she said are different to TSW rebounds – can last longer than usual now that she has given up topical steroids. However, she has explored alternative options including private intolerance tests, and hopes to pursue allergy tests as well as homeopathic or neuropathic routes in the future. "I still experience flare-ups, I still struggle to sleep and I still have mental battles that I'm dealing with," Harriet said. "My skin is extremely texturised at the moment, so I want to get to a place where it's more of a calm consistency."
Everyday activities can prove challenging, such as visiting the gym – which she values for maintaining both her physical and mental wellbeing – and travelling overseas. On holiday, she can fill an entire suitcase with products – including emollients and moisturisers, compression gloves and even her own bedsheets – purely to keep her skin condition under control. On one trip to Barcelona in July 2023, Harriet said she hadn't suffered an "intense flare-up" in weeks, so she "packed light", only to get one during a heatwave that left her "close to needing hospital care".
Dr Akinjolire explained: "A sudden change in climate, particularly heat and humidity, increases sweating and can compromise the skin barrier, making it more reactive to irritants it would normally tolerate. Add in new water, different food, unfamiliar fabrics in bedding or upholstery, and disrupted sleep from travel itself, and you have multiple potential triggers converging at once, often in a short space of time."
Harriet talks about her experiences on Instagram to her 18,000 followers and is co-founder of EczeMates, a London-based group hosting social events for people with skin conditions. She says it is "really important" for her to speak openly about how eczema and TSW specifically impacts black skin. "As a black woman, if doctors have even seen topical steroid withdrawal, they're basing symptoms on our white counterparts or people with fairer skin," Harriet said. "Things like redness of the skin which you wouldn't see in black and brown people. But actually, realising there are people outside of my world that are going through this and hearing their journey, I found a community for myself. And I think they found a community too."
