A young woman says her skin started "oozing" and her hair fell out after she stopped using her eczema creams.
Emily Gardiner-Walsh, 21, started suffering with eczema as a baby and was given topical steroid creams to help soothe her symptoms.
But it wasn't until last year that the mum began experiencing "painful" side effects of the medication just three months after giving birth to her son.
The nursery practitioner, from Southampton, experienced red blotchy patches of skin on her face “like sunburn” which spread across her entire body.
Panicked something was seriously wrong, Emily went to the doctor for blood tests which found that the cause was the creams she had been using for two decades.
She decided to stop using them and within days, her skin reacted horrifically – swelling up, “oozing and weeping” and becoming painfully dry and cracked – called topical steroid withdrawal (TSW).
Her symptoms included: extremely dry skin that shed constantly, oozing and weeping areas where the skin had thinned, red skin syndrome, swollen eyelids, skin infections, hair loss, insomnia and bruising under the skin.
“The pain was like my whole body was on fire,” Emily told NeedToKnow.online. “The nerve pain was the worst – it felt like loads of electric shocks running through my body and I couldn’t keep still.
“It was difficult to look after my son when I was in so much pain as I didn’t want to move. Every movement I made hurt so badly, and I would have to be wrapped up warm as the cold air would burn me and sting."
As well as battling her physical symptoms, Emily’s self-confidence took a knock as a result of her changed appearance.
She said: “My whole face looked like a different person and my skin was covered in cuts and lesions, and would shed so badly. My self-esteem wasn’t great.”
Emily wants to raise awareness of the dangers of TSW – saying it has “destroyed so many lives”.
The symptoms may occur in people who apply topical steroids for two weeks or longer. For Emily, there was two decades of use that her skin had become accustomed to.
She said: "When I was first prescribed the creams at three months old, we were told to apply them wherever and whenever we needed to.
“My skin was so bad that I would have to be wrapped up in bandages and smothered in creams.
“As I got older I only had trouble with the creases of my elbows and back of my knees. It got better and pretty much completely cleared after leaving school June 2017.
“In October 2017 my skin started to get so bad I was bed bound for weeks with red, oozing skin and found a lot of my hair fell out. The doctors gave me tubes full of steroid creams and tablets and it went away. I didn’t know it was TSW at the time.”
After this, her skin was “amazing”, she said – until she gave birth and noticed the redness reappearing.
Emily added: “It spread to my chest and slowly covered my whole body with only a small patch of normal skin on my back.
“My lymph nodes in my neck were very swollen and I could hardly move my neck left or right. My skin started to get very dry and flaky – I tried every type of moisturiser and it would just be dry again after five minutes.
"I had countless doctor appointments, blood tests, going to the hospital as I was worried I had something seriously wrong with me – only for them to tell me it was just my eczema.”
After researching online, Emily found out about TSW and the dangers of the creams.
In August 2022, she ceased used of them once and for all – but within a few days went “downhill massively”.
It took her skin five months to heal, but she wishes she had known more about the side effect prior to using the creams.
She said: "I kept very positive during it all because I knew it wasn’t forever and I had amazing support from my family and friends.
"I’ve been on maternity leave while going through it so I did keep myself away in my house at my worse points and it would upset me that I couldn’t go out and do fun things with my baby.
"I was lucky enough to go through this for only just over five months and I know many more people have gone months to years until they see improvements.
"I am now doing a lot better and have been seeing amazing improvements in my skin and now have my sleep back. I still get small flares of red skin every now and again but nothing like before.
“Having to go through this has been very difficult and painful and I’ve had a lot of anger as I wish that this condition was looked into more as it has destroyed so many lives.”
