A woman claims her steroid creams have left her with skin as thick as an elephant and she is still battling insomnia three months on.
Pharmacist Sofia Love, 24, was diagnosed with eczema at birth and was prescribed creams as a teenager to prevent her skin from developing a painful and itchy rash.
With her medication proving less effective as she reached her late teens, Sofia's GP prescribed her a higher potency steroid cream at the age of 18 to alleviate her worsening symptoms.
For five years her cream successfully reduced the red, painful rashes associated with the skin condition.
However, in July 2020, Sofia, from from Derbyshire, had a major flare-up in which the skin on her arms, legs, and face became red, inflamed, and itchy.
She began to think that the steroid creams she had been taking for so long were not proving to be as effective as they once had.
After conducting her own research online and talking to an old friend from school who had suffered similar symptoms, Sofia began to believe her unbearably painful skin was a sign of topical steroid withdrawal - an adverse reaction to steroid creams if they are overused or suddenly stopped.
Since Sofia had been prescribed with her steroid cream for over five years, she was convinced that this was the root cause of her growing problem.
Sofia's condition continued to worsen and her flare ups would leave her with cracked, flaky skin and red, crusty eyes.
She even had to go to A&E after the extreme dryness in her eyes led to her cornea becoming stuck to her upper eyelid.
Visits to three different GP's in order to try and find a solution to her ongoing problem did not help, with doctors either not recognising topical steroid withdrawal or conversely offering alternative steroids to combat her symptoms.
In January 2021, Sofia decided that she was going to stop taking steroid creams altogether - however, the period of 'cold turkey' that has followed has left her feeling worse than ever before.
Sofia's skin constantly feels like it is 'on fire ' and 'red raw' and at night time, her skin cracks and oozes, leaving her pillow and bed sheets damp.
However, sleeping is not a surety as the combination of soreness and itchiness has left Sofia suffering from insomnia for over three months.
Alongside not using her steroid creams, Sofia is undergoing a 'no moisture' treatment in which she limits the amount of baths she has each week and avoids moisturising creams in the hope that this will alleviate her soreness in the longer term.
"I have had eczema all my life and was even hospitalised as a baby because it was so severe," Sofia said.
"It then fluctuated throughout the years so in my teens I was put on hydrocortisone which seemed to help.
"This then became less effective so the GP then put me on Mometasone - a high potency steroid cream which I was using for five years between the ages of eighteen to twenty three.
"I then had a major flare in July last year and I realised the steroids I had been taking were no longer effective.
"At the same time, a girl from school made me aware of what topical steroid withdrawal was by sharing her story.
"I was suffering from exactly the same symptoms and was convinced this is what was happening to me too.
"When I started to get flare ups I would notice it was always in my eye area and I would have these violent red rashes all up my arm. My skin feels like it's on fire and literally burning up.
"Trying to regulate my temperature has been one of the most difficult things as my skin will feel like it is incredibly hot, but the rest of my body will be freezing cold.
"These flare ups often happen at night which has made regular sleep almost impossible and I've suffered from insomnia as a result.
"My skin feels very thick, like an elephant's, and on some days it is painful just to move.
"It gets so dry and cracks easily which leaves me with oozing sores.
"I have spoken to three different doctors at my local surgery and none of them were able to advise me on what to do next.
"When I have tried to explain, they have offered me more steroids, which I refused."
After struggling to explain her condition to various doctors, Sofia hopes that sharing her story will spread awareness for the little-known condition.
With alternative treatments including cryotherapy and red light therapy planned for the near future, Sofia is hopeful that the difficult journey she has had to endure will soon reach a positive conclusion.
"I am hopeful for the TSW community as we are growing stronger and wiser even in the short time I have been involved," said Sofia.
"However, we need additional support from our healthcare system as this condition can have a serious impact on your physical and mental health.
"I don't think healthcare professionals have taken this very seriously, so I hope in the future doctors will tell people the implications of long term steroid use.
"For my own treatment, I am looking into cryotherapy and red light therapy as I have heard these can be quite effective for helping with TSW.
"Ultimately, I want to try and raise as much awareness as I can for the condition.
"I would have never had touched topical steroids knowing the long term implication it would have on my life."
