This brave woman shared her ongoing journey with the skin condition Topical Steroid Withdrawal.
Josie North, a card game designer, from Shropshire, UK, first experienced signs of Topical Steroid Withdrawal, also known as TSW, after being prescribed steroid cream to treat her eczema.
Topical Steroid Withdrawal is a severe reaction that can occur after stopping the use of topical steroids.
Some of the side effects are intense redness of the skin, severe burning sensations, extreme itching, peeling skin, oozing sores, skin pimple-like bumps and hair loss.
After initially experiencing eczema on a small scale, it wasn’t until it appeared on her face and neck that she decided to visit a dermatologist, where she was prescribed a steroid cream that she would use on and off for a fortnight at a time.
When Josie came off of the steroid cream that was when her TSW symptoms started to develop and, what she thought was her eczema at the time, started to get worse.
After being told by her dermatologist that she needed more steroid cream to keep her ‘eczema’ under control, Josie’s TSW only got worse and it was a snowball effect.
When raising her concerns to her doctor, she was promised that using a stronger steroid cream would not cause TSW and that the condition does not exist.
Josie first became aware of TSW after seeing the effects of the condition on social media but she trusted her doctor’s opinions that it would not affect her.
However, her pain got so severe that she had to visit A&E and her skin began to flake off and scabs were forming on her face.
TSW started affecting Josie’s sleep due to her high cortisol levels in the early hours of the morning causing irritation and itchiness of the skin.
She explained how became numb to life and felt like she was always on a low and there was nothing to get excited for.
Her main joys had become triggers for her TSW and she had to change her diet to low histamine foods, due to food being a main trigger.
Josie felt that she lost her sense of identity as her love for fashion, hair and makeup and expressing herself triggered and irritated her skin.
Josie had around £7,000 in her savings before she was affected by TSW and admitted to spending nearly all of it on remedies and tests at the start of the journey, when she was unsure of what her condition was.
After learning that she had TSW, Josie was adamant on healing naturally after seeing the effects medication had caused her already.
After many months of pain Josie’s skin naturally started to heal and after looking for that last push over the line to get better, she found CAP therapy – also known as cold atmospheric plasma therapy.
She had seen many people online go to Thailand to undergo the therapy, claiming it is the cure to TSW.
After applying for the UK version, she found out the waiting list was full but it wasn’t soon until she discovered a local therapy nearby who did the treatment.
However, after undergoing the treatment and experiencing tender and swollen skin, Josie decided not continue with the process and her TSW had severely flared up once again.
Josie explained how her pain went from 0 to 100 and claimed she believed her hair would fall out from all of the scabs in her scalp and weeping after CAP therapy.
With her journey of her TSW not being linear, Josie explained how she had no choice but to go back onto medication and go on immunosuppressants.
With the prolonged use of immunosuppressants not advised, she hopes that when she comes off them after a year she will be healed and not back at square one.
Josie believes that mentally TikTok got her through her syndrome the first time by sharing her experiences online and gaining a community.
She said: “I don’t know how I’d go through it all again if I come off these immunosuppressants and I’m bad.
“I think the only thing that I will find a bit solace is knowing that there’s that community out there on TikTok that can help me and I can help them.
“The only thing mentally that got me through it was TikTok.
“I thought if I can make an impact and people can understand what I’m going through, then that’s gonna make me feel more confident, because I can go out and then people know what it is.
“I feel like at the moment it is getting more traction on social media but we need more research from doctors and dermatologists.
“At the moment we are literally shooting in the dark, trying to work out what is going on with us and it’s such a lonely experience.”