Lily Holden’s experience started when she noticed a small rash on her neck
A woman who used steroid creams for a decade and later experienced suspected severe withdrawal has spoken out about her ‘unbearable, never-ending agony’, but says the ordeal has taught her self-love.
Lily Holden, 30, from Bristol, noticed a small rash on her neck after returning from an outdoor adventure retreat in 2014, and was prescribed a topical steroid cream to treat it.
The senior brand marketing manager for cookware company HexClad, said she then began to experience ‘random rashes’ over her neck and was prescribed steroid creams intermittently for 10 years. But in January this year her face ‘erupted’ in circular patches of rashes.
Lily began to ‘really panic’ and was prescribed an immunosuppressant topical cream instead, but when her symptoms ‘came back worse’ after she stopped using it, she realised something more serious was happening.
After discovering topical steroid withdrawal (TSW) on TikTok – believed to be an extreme withdrawal response to long-term use of steroid cream, causing inflammation, flaking, itching and weeping skin – Lily realised she needed to ‘ride it out’.
She stopped using any medicated creams on her face and from July to October this year, she suffered with ‘red hot and painful’ inflammation and ‘open, raw wounds’, which led to repeated infections on her face.
Lily revealed that her skin is now ‘completely fine’ after she sought additional treatments, and she’s on a mission to raise awareness about TSW and encourage the medical community to recognise the condition more.
“I joke that people would pay a lot of money to go on a self-love retreat – I’ve just had it for free via TSW,” Lily told PA Real Life. “I’m almost enamoured with myself now, I’ll look in the mirror and feel love for myself and my body for getting me through the condition. When I lost my appearance, I had to negotiate an identity without it and I had to accept quite quickly that my skin doesn’t define me.”
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The National Eczema Society explains that TSW is a severe reaction that can occur when topical steroids have been used for a long period.
The skin turns red, and patients may experience swollen glands, intense itching and oozing, and burning skin with excessive flaking, according to the charity.
Lily said that she never previously had any issues with her skin. “It almost sounds quite big-headed, but I’ve never suffered from eczema or acne and I got off really lightly on the spot-front,” she said.
In 2014, Lily recalled going on an outdoor adventure retreat in Cheshire, where she swam in ‘swampy water’. Upon returning home, she noticed a small rash halfway up her neck and assumed it was a result of her outdoor escapade.
When the rash persisted after three weeks, Lily consulted a doctor and was prescribed a topical steroid cream to apply to the affected area. The rash vanished, Lily said, but over the following decade, she experienced ‘random rashes’ appearing around her neck and lower face.
“For different intervals throughout a 10-year period, I’d go back to the doctor to say I had another rash and I’d be given another steroid cream,” Lily said.
In January this year however, Lily said her face ‘erupted’ with circular patches of itchy rashes, and she was diagnosed with perioral dermatitis – a common skin condition that can cause a red, bumpy rash around the mouth.
“My doctor said it could be because I was repeatedly applying steroid cream near my face but ironically, I was given another steroid cream to treat it,” she said. Lily said ‘alarm bells started to ring’ when she would apply the cream to her face but new areas of her skin were becoming affected with rashes.
Around this time, Lily said she came across TSW on TikTok, where others were sharing their experience with the condition. “People were saying you can tell you’re suffering from TSW if your rashes are coming back worse, or places you’ve never applied a steroid cream are becoming affected,” she said.
Lily said she asked her doctor about TSW but she claims ‘they didn’t acknowledge the condition’. She said she was prescribed with a different medication for her rashes, an immunosuppressant topical cream, but her symptoms ‘came back worse’ after she stopped using it for the duration it was prescribed.
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“Because of the awareness from TikTok, I knew I had to ride it out – I couldn’t just keep using these medications,” she said. In June this year, Lily stopped using any steroid creams and her skin went through a ‘withdrawal’ process, she said.
She first noticed ‘finger-like marks’ around her mouth, eyebrows and nose where she had applied the immunosuppressant topical cream – before she ‘lost the skin’ and was left with ‘open, raw wounds’.
Lily said TSW then ‘joined the party’, and she experienced ‘red hot and painful’ inflammation, flaking and itchy skin, and ‘weeping’. She also experienced staph infections on her face – caused by a bacteria called staphylococcus that most often affects the skin, according to the NHS.
“Because I had no skin barrier, it got repeatedly infected and I had orange weeping,” she said. “My whole face blew up and sat in a different shape – I didn’t even recognise myself.
“It was just so incredibly painful, the itching was just an unbearable, never-ending agony.” Throughout this period, Lily said she felt ‘alone’ and ‘isolated’.
“I couldn’t go outside because my skin couldn’t tolerate the air or any kind of sun, I’d go days without sleeping, without leaving my flat,” she said. “I couldn’t eat at times because my mouth didn’t open, I couldn’t wash because the water felt like acid on my skin. I was looking in the mirror and feeling quite repulsed.”
Her family and friends were her ‘biggest cheerleaders’throughout this time, Lily said, and they ‘got her through it’. She also turned to TikTok to connect with others in her position, and she said she received an ‘outpouring’ of advice and support.
Lily’s skin started to recover in October this year after she invested in a combination of therapies, including taking supplements and seeking advice from a homoeopath. Her complexion is now ‘completely fine’ – but she added there is ‘not a one size fits all’ with TSW.
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Lily wants to raise awareness around TSW, and she hopes the medical community will do more to acknowledge the condition. “One of the worst parts is not feeling seen or listened to, and feeling so alone when it comes to your health,” she said.
“I think with skin problems, it’s a case of saying ‘here’s a cream, you’ll be fine’, but people need to be so careful.” To other sufferers, Lily said: “You’re not alone, you’ll get through this and you are, and always will be, more important than your skin.
A joint statement by the National Eczema Society, the British Dermatological Nursing Group and the British Association of Dermatologists acknowledges TSW and the urgent need for high-quality research into the condition.
While it said topical steroids are a safe and effective treatment for many people, and most side effects are well-known, the group of side effects known as TSW are generally less well understood.
The statement also noted that there are many challenges to understanding and managing TSW, and a lack of a clear medical definition can make it difficult for healthcare professionals to communicate with those who are experiencing these reactions.
According to the NHS website, steroids – including creams, lotions or gels – often do not cause side effects if they are taken for a short time, but if a high dose is taken for a longer time, there is a higher chance of getting more serious side effects.
Most people will not have side effects when they stop taking steroid medication, the NHS says, but it is important to follow advice from doctors as patients may need to reduce their dose gradually.
