Skin cream withdrawal pain 'like being electrocuted' left footballer stuck in bed

A 21-year-old who went from being a keen footballer to "bedridden" after he stopped using a steroid cream to treat his eczema says, at his lowest point, it felt like he "was being electrocuted every second".

Meilir Rowlands has lived with eczema his whole life, and had used topical steroid creams prescribed by his doctor "on and off" since he was a baby.

But when he tried to stop using the cream about three years ago, his skin progressively got much worse and he later discovered he had topical steroid withdrawal (TSW).

NICE advises that TSW reactions are rare, but can occur with "long-term or inappropriate" use of topical steroids, particularly moderate to high strength.

Eczema affects approximately 10% to 20% of children and 2% to 10% of adults worldwide, according to the National Eczema Association.

The condition causes areas of the skin to appear red, dry and itchy.

Meilir, from Landwrog in Gwynedd, was prescribed topical steroid creams to treat his eczema - a common treatment for many of the eight million people who have eczema in the UK.

Over the years, he said, the strength of the prescription creams got stronger and stronger. When he stopped taking them halfway through his first year at university, the inflamed areas of skin were no longer like what he had always dealt with, instead covering most of his body.

He later discovered he was experiencing TSW, which meant his body was reacting to the topical steroids being stopped.

His face and neck were among the affected areas - places he had never used the steroid creams before.

"It has taken such a toll on me mentally," said Meilir.

"At the start, it was more of me being confused and a bit scared of what was happening to me... but, during the last few months, I've just felt so exhausted with it all, especially after trying everything possible to help myself and my skin.

"I've been bedridden throughout most of it, struggling to get out of bed to do simple tasks. I just felt so depressed... I was doing nothing while my mates went out and enjoyed their university life."

Steroids - also called corticosteroids - are medicines used to treat a range of conditions such as eczema and asthma.

The NHS advises that most people will not have side effects when they stop taking a steroid medication, but says those on a high dose or who have been taking them for longer than three weeks usually need to reduce their dose gradually.

In March, Prof Sara Brown, a consultant dermatologist at the University of Edinburgh, secured funding from the National Eczema Society for first-of-its-kind research into TSW, after noting "unexplainable" symptoms in her own patients and the desperation in social media posts from others with eczema.

"We're seeing patterns in TSW that cannot be explained by what is known about eczema," she said.

"Before everything changed, I was a social person," said Meilir, who was vice captain of a football team and part of the Welsh society at Cardiff Metropolitan University, where he recently graduated with a degree in sports media.

"I felt that even with my condition I had to make an effort to play [and I am] very proud of myself for doing that," he said.

"But I look in the mirror and see someone who is so different to myself. I cancel plans or can't turn up for my friends and family - so different to the real me, who enjoys being in the company of others."

Meilir was taking an immunosuppressant called cyclosporine to help manage the symptoms of TSW, but in March he was advised by a doctor to stop the medication and experienced "the most challenging time of my life".

"The nerve pain I was dealing with made sleeping impossible," he said.

"It felt like my skin was on fire and like I was being electrocuted every second – it sounds dramatic, but... I pretty much became an insomniac."

He said, in May, "things thankfully started to improve a bit" and he was able to attend his graduation.

But having tried several medications, diets, and supplements, he felt nothing was improving enough, and started researching alternative options.

"I am fed up of going on stuff that masks and suppresses the symptoms rather than treating the actual problem," he said.

He has decided to raise money to pay for specialist Cold Atmospheric Plasma (CAP) therapy in a private clinic, which he believes could be "life-changing", and is close to reaching his goal of £3,000.

It is a relatively new therapy – not officially recognised by the NHS across the UK – which uses charged gas particles to help kill bacteria on the skin.

"I've accepted that I will have some sort of eczema throughout the rest of my life and I'm OK with that, but I really do hope it becomes to a point of it being manageable, as it's been quite the opposite for the last few years," he said.

"I hope to go travel a bit and just do the simple things such as going for coffee with my girlfriend or going to the gym, as those are the things I currently can't do a lot of."

He said he was "blown away" by the generosity of people towards his fundraiser, adding he did not know where he would be without the support of his girlfriend, Lili, "who's been there for me every step of the way, has been to so many appointments and A&E trips and who looked after me when I physically couldn't do it myself".

He said he wanted to raise awareness of TSW, having been "oblivious" about it himself.

"Me and my mother were never really warned properly... but I do acknowledge that there is a lack of research and a lack of options to treating eczema."

TSW is a severe reaction that can occur when topical steroids, usually strong or very strong ones, have been used for a prolonged period - usually for more than a year - to treat eczema, according to charity Eczema UK.

TSW can sometimes appear while still using a topical steroid, but becomes much worse on stopping and more severe than the original condition.

Red patches of skin appear, often in areas where the person never had eczema before, and other symptoms include swollen glands, intense itch and oozing, burning skin with excessive flaking, tiredness, hair loss, weight loss, and sleep and mood disturbance.

The charity said that better understanding of how to use topical steroids safely was needed to prevent TSW, as currently "people with eczema are liable to need multiple courses over their lifetime and there is currently no guidance about how much can be used safely over the longer term".

TSW has divided opinion among doctors and other healthcare professionals, with some viewing it as a condition in its own right and others regarding it as a severe case of eczema.

Guidelines from the National Institute for Health and Clinical Excellence (NICE) recommend a step up and step down approach for treating eczema, introducing emollients first, then lower dose steroids, then increasing or decreasing the potency as needed.

Additional reporting by Adam Hale