Content note: this article contains discussions of suicidal ideation that readers might find upsetting

Eczema has always been something I’ve struggled with. From the flaky skin that makes it harder to put on make-up to the constant itching, it’s always been there in the background. I’d always been grateful that it hadn’t become painful or started to interfere with my quality of life until, one day, it did.

Mine is a familiar story for anyone who’s had experience of chronic eczema. Growing up, my GP’s solution to the itchy, hot, flaky skin was to use steroid creams like hydrocortisone. I’d apply it, and for a week or so, the affected area would calm down… until it flared up again. So I dowsed it in more cream. I became stuck in a topical steroid cycle.

Eventually, there came a day when I couldn’t survive without putting steroid cream on the flaky patches of my (dominant) right hand. I was using it up to six times a day, and anything weaker than hydrocortisone stopped working. My hands and the affected areas of my face were blemished by bleeding, weeping gashes that itched and reappeared whenever I tried to wean myself off the cream. Jewellery was a no-go. Long sleeves were out. Even holding a pen to write became excruciating.   

After a recent dose of antibiotics and a daily application of eczema-friendly moisturiser, my skin has calmed down again, but I can’t help feeling that another flare-up is on the way – and that there’s little I can do to stop it without the use of steroids.

This is all incredibly isolating and depressing, but something that’s made it far more manageable has been finding the topical steroid withdrawal (TSW) community on social media. TSW is far more common than I initially thought, with lots of people out there living with much more severe cases than me. In fact, the #TSW hashtag now has over 1.1 billion views on TikTok, with patients taking it upon themselves to share their experiences and help those who feel dismissed by medical professionals. 

“TSW is a potential complication of using steroid-based creams or ointments and occurs when the steroid is stopped,” explains Dr Dev Patel, advanced aesthetics practitioner at Perfect Skin Solutions. “Symptoms can include burning, itching, flaking, oozing from pus-filled lumps, redness beyond the area of skin originally affected, hair loss and pain.”

According to the NHS, TSW occurs when people using steroid creams or corticosteroids stop applying them after a prolonged period. Usually, the issues start after you’ve been using them consistently for 12 months.

If TikTok is anything to go by, the international community is vast, but precise statistics on how many people are affected by the condition don’t really exist. The UK government carried out a review of topical corticosteroids in 2021, and concluded that better information should be made available to topical steroid users – including the potential for overuse and, for want of a better word, addiction.

Dr Patel suggests that including more comprehensive information within the product packaging might be useful, given that these super-strength creams are now more available than ever.  

“More people are buying steroids without proper medical advice due to the increasing prevalence of online pharmacies, poorer access to GP appointments and more global travel,” he tells Strong Women. “Potent steroids are freely available over the counter in some countries.”

He also highlights that women tend to be affected by TSW more than men, something campaign group Scratch That is keen to highlight. The group cites a study in which 81% of the 1,085 surveyed were female but suggests that it’s unclear whether women are more likely to suffer specifically from topical steroid withdrawal or are more likely to use topical steroids than men.

One woman who openly shares her struggles with severe TSW on her Instagram is 34-year-old Bethany Norman, who swore off steroid creams when she found out about the condition.

“My eczema has always been pretty manageable but there’d be times when a flare-up would become problematic,” she tells Strong Women. Sporadically prescribed all kinds of topical steroids, it wasn’t until she was 30 that things took a turn for the worse.

“In August 2019, I took a trip to Ireland and didn’t take my shower gel – a key part of my skin routine. I was adamant my worsening, abnormal skin symptoms were down to not using that gel, but the symptoms continued to show up even once I was home. Doctors prescribed me one of the strongest steroids, which worked for a week until what I thought at the time was eczema came back with a vengeance. This led me to google ‘steroids not working’, and I out about TSW. Lo and behold, there was a whole skin community talking about it on Instagram.”  

Norman then had to wait three months for a dermatologist appointment, where she was told her “excessive and unmanageable shedding, elephant skin, skin atrophy, thermoregulation issues, sporadic electric shocks, insatiable itch, sleep loss, hair loss and wet weeping skin” were simply signs of severe eczema. That diagnosis, she says, felt like she was being “dismissed”.

And then she became pregnant. It was at that point, Norman says, that support from her GP fell off a cliff. The lack of support continued, even when her baby was diagnosed with eczema.

“By winter 2022, I found myself having suicidal thoughts while going through my worst ever flare-up,” she recalls. “That lasted for eight months, and I was having to deal with that while being a single parent and having to live back at my parents’ home just so I could deal with my skin.”  

Her experience of medical professionals has been so bad that Norman says she now only seeks help if she’s at rock bottom. “I know how vulnerable it [makes me feel] to be dismissed,” she explains. “Over three years into TSW, I’m still being advised to use steroids. It’s hard to put into words how TSW has impacted my life – I’ve lost faith in the medical profession entirely. I’m terrified I could go back to feeling suicidal any time my skin takes a turn for the worse. I’ve got no control over it; I feel like a cursed, abandoned ticking time bomb.”

The one glimmer of hope for Norman has been in building an online community and working with the TSW charity Itsan (International Topical Steroid Awareness Network). 

“Sadly, our online community seems to be growing rapidly,” she says. “There are TSW Facebook groups with over 20,000 members, and there are no doubt thousands of others at risk of the condition but who are still unaware of TSW and are being prescribed more steroids.”

If the risks are so high, you might be wondering why anyone would use steroid creams in the first place. They’re mainly prescribed to eczema patients, and Dr Ifeoma Ejikeme, medical consultant and founder of Adonia Medical Clinic, explains that eczema is usually caused “by a combination of genetic factors and environmental triggers”, the symptoms of which can often be alleviated with steroids.

“They have anti-inflammatory properties that help to control itching and reduce inflammation, and they are effective in managing symptoms caused by triggers,” she says. Dr Patel also notes that they’re an important part of eczema treatment as they help to avoid skin thickening. The fact that they tend to be pretty cheap also makes them accessible to most people. 

However useful they might be, a growing number of patients are turning their backs on steroid creams. So, what can you use instead to calm the itching and take down the swelling? Well, Dr Patel states that eczema isn’t preventable and the treatments currently available tend to deal with the symptoms rather than the root cause.

“At present, treatment strategies are focused on the mechanics of the condition itself and repairing the skin barrier,” says Dr Patel. “As research continues and we gain a greater insight into areas such as genetics and how the gut influences skin health, we may one day be able to identify the optimal diet for a baby or expecting mother to prevent eczema. Twenty years ago, diet wasn’t thought about in relation to the condition, but today, it’s a core part of the discussion.

Dr Ejikeme believes there are non-steroid options for managing symptoms. “Moisturising the skin regularly with emollients to help maintain hydration, applying cool compresses, taking oral antihistamines and using gentle skincare products while identifying and avoiding triggers can help to manage flare-ups naturally,” she says. 

Norman has also found that reducing foods high in histamine, having oat baths, using a natural skin balm (such as Balmonds Skin Salvation) and wearing compression gloves and tube bandages help her to manage symptoms. But, she notes: “There are no quick fixes when it comes to TSW. Time seems to be the answer.”

For anyone struggling with TSW, she stresses the importance of finding community and knowing that there are other people out there going through the same struggle. “TSW really does change your whole outlook on the world, but know that you’re not alone. And remember, you have a right to ask for other treatment options. Your lived experience is always valid, and you know your body more than anyone else.”

If you or anyone you know is struggling with suicidal thoughts, contact Samaritans on 116 123.

Images: Getty