A young woman "felt like she had acid thrown at her" caused by a steroid face cream prescribed by doctors.
Mollie Oakley, 27, was left with swollen eyes and bone-deep itching so severe she likened it to "feeling like bugs are crawling all over [her] body" while she was attempting to sleep at night. She has only able to sleep four hours per night and was signed off work as a result.
The cream was given to Mollie to help eczema around her mouth but she's since found out she had Topical Steroid Withdrawal (TSW), a rare rebound reaction. Her symptoms have "been in a struggle not just physically, but mentally too" in the nine months since she first took the cream.
The spa receptionist, from West Sussex, said: "I am kept awake every night with the sensation of bugs crawling all over my skin due to the nerve damage which will take a long time to heal, and feeling depressed on really bad skin days.
"I have spent thousands of pounds to try and find a cure, from creams to cryotherapy, private dermatologists, allergy testing, kinesiologists and more, but nothing has been able to get my skin back to normal."
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Mollie suffered blotches on her face, neck and chest (mediadrumimages / @MollieOakley)
The 27-year-old woman's face flared up in bath (mediadrumimages / @MollieOakley)Mollie first began to develop facial eczema due to wearing Covid-19 masks during 12-hour shifts as a healthcare assistant at a clinical assessment unit in 2020 during the pandemic.
She was then prescribed a strong steroid, mometasone furoate, for the eczema around her mouth, and she began using the cream to control her occasional eczema flare ups on her face, arms, hands and neck. This led to her developing new allergies and occasional unexplained swelling of her eyes and lips.
It wasn't until February 2023 when she started experiencing symptoms that she now knows to be TSW, which happens when your body has become addicted to the cream. Her symptoms include intense skin redness, bone-deep itch, insomnia and nerve pain.
Incredibly, after Mollie reported the tragic side-effects she was experiencing thanks to the strong steroid cream prescription her doctor's answer was to prescribe more steroids, via oral tablets. The woman has been on a long waiting list for Cold Atmospheric Plasma, a treatment which has been shown to reduce microbial load without any known significant negative effects on healthy tissues.
But it is not available on the NHS and so Mollie will have to spend £160 each week for at least four months for one-hour sessions at a special clinic in Winchester, Hampshire, around 80 miles from Mollie's home.
Mollie's hand and forearm was also affected frequently (mediadrumimages / @MollieOakley)The recptionist continued: "At the beginning, I was only sleeping four hours a night most days. My skin has fluctuated, so when it's slightly better I can get around six to seven hours sleep, but at the moment it has flared again, which means I'm waking up roughly three times per night extremely itchy, and it takes me a while to get back to sleep again.
"I've tried prescription sleeping tablets and nothing seems to be strong enough to help. If I wear cotton gloves, I rip them off in my sleep as the itch is too intense to resist and I often have to wrap my neck in zinc bandages to stop myself from creating open wounds from scratching.
"The itch is worst in the evenings, which means I often get very distressed, as I can't escape the horrendous feeling and have to just endure it. I used to be a very social person, and went out most weekends. Within the last few months I have only been out with friends twice as TSW has affected my confidence a lot. I cannot wear any makeup currently, and my face is very red and flaky which I'm self conscious of.
"TSW has completely affected my social life, and I was also signed off work for one month in April due to barely being able to leave my bed because my skin was so painful. Since then, I have been working full-time as a receptionist, which is a struggle facing guests every day, as I've occasionally had comments such as 'what's happened to your face', as often people have never heard of TSW when I try to explain."
Mollie worked as a healthcare assistant throughout lockdown (mediadrumimages / @MollieOakley)
The young woman has raised awareness of the rare reaction (mediadrumimages / @MollieOakley)Recalling her initial symptoms, Mollie said: "One day I woke up and my eyes were almost swollen shut and very red. The redness continued to spread throughout the day, moving further down my face.
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"I went to the doctors as I felt like I'd had acid thrown on me, my skin was burning hot, it wasn't like anything I'd experienced before. Then my symptoms developed even further with burning red inflammation that spreads, especially after contact with water or moisturisers, as well as severe bone deep itch, insomnia, body temp fluctuations, nerve pain, elephant skin, weeping skin and excessive skin shedding. Even just showering is extremely painful, and causes an itch attack which is really distressing every day.
"I just hope that I can get my life back soon as TSW has negatively impacted my sleep, social life and happiness, and the fact that you can't get much help from doctors means that many people are left to suffer alone, day in, day out."
To donate to Mollie's crowdfunding appeal, which is designed to help her cover the costs of the treatment, click here.
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