By Rebecca Chitolie
THIS WOMAN who developed bone-itching oozing burns from a steroid prescription that made her feel like she had acid thrown in her face has slammed the medics who she says caused the devastating condition.
Mollie Oakley (27), a spa receptionist from West Sussex, UK, was left with swollen eyes and bone-deep itching so severe she likens it to, “feeling like bugs are crawling all over my body” while she is attempting to sleep at night, and an oozing face after being prescribed a steroid cream for eczema around her mouth. She has only able to sleep four hours per-night and was signed off work as a result.
She has since found out her suffering has been caused by the condition known as Topical Steroid Withdrawal (TSW), where she says medics failed to advise her on how to safely administer potent steroid cream for her eczema.
Mollie worked as a health care assistant at a clinical assessment unit at Crawley hospital in 2020, during the lockdown caused by the Covid-19 pandemic. While working at the hospital she began to develop facial eczema due to wearing covid masks during 12 hour shifts.
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 that she started experiencing symptoms that she now knows to be Topical Steroid Withdrawal, 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.
Mollie described how her life has been impacted.
“The past nine months have been a struggle not just physically, but mentally too”, said Mollie.
“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.
“I am now fortunate enough to have reached the top of the waitlist for a treatment called Cold Atmospheric Plasma, which thousands of people wait months for.
“I will be travelling to Winchester for one hour sessions every week, which cost £160 each, and most people need treatment for 4-6 months.”
Mollie said that she was given mixed advice from doctors on how to use steroid creams.
“The doctors have never clearly verbalised how to use them safely. Only one mentioned using a pea sized amount, but others have said to use it as often as I felt necessary”, said Mollie.
“The steroid creams were always put onto my repeat prescription, therefore I never had a follow up to discuss how my skin was and I could keep getting more prescriptions whenever I liked, which luckily I didn’t do very often.
“They also never specified that you should ‘wean off’ steroid creams. They just said to use it any time I had a flare up to ‘control’ my eczema, when really, it’s just causing addiction.”
Mollie said that at the beginning she was unable to sleep anymore than four hours per night and still is affected to this day.
“At the beginning, I was only sleeping four hours a night most days”, said Mollie.
“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 has now been suffering with TSW for nine months, and has tried almost every technique to get rid of it. She is now on the waitlist for a treatment called Cold Atmospheric Plasma, and is raising money to help her fund it since she said the condition is not resolved by doctors.
“Even though I didn’t use much of the cream, I started to notice that my eczema was spreading to places it had never been before”, said Mollie.
“I started developing new allergies to things that had never caused problems in the past, and would occasionally experience swelling of my eyes and lips, with no explanation as to why.
“It wasn’t until February 2023 that I started experiencing symptoms that I now know are from Topical Steroid Withdrawal.
“This happens when your body has become addicted to the creams that doctors prescribe. Symptoms include intense skin redness, bone-deep itch, insomnia, nerve pain, and the list goes on.
“In March I was referred to NHS dermatology but the waitlist was roughly six months, even for urgent cases, and I was so desperate due to how much pain I was in every day and night, so I paid to see a private dermatologist.
“When I saw the dermatologist, it was a short appointment in which she quickly dismissed TSW, saying it was very rare, and that I needed an allergy patch testing and to continue with stronger steroid creams or try immunosuppressant drugs.
“Once I’d had the patch testing, it showed I was allergic to nickel, as well as an ingredient in most steroid creams, tixocortol. The doctor printed out an information sheet of all the things I now needed to avoid, that contain or are similar to tixocortol, and it was a list of the steroid creams and tablets that I’d previously used, hydrocortisone, mometasone furoate, prednisolone.
“Even after telling me all this, the dermatologist still then suggested I try a long course of oral steroids, prednisolone, which contain this ingredient.
“It seems like dermatologists are adamant at trying to push steroids onto patients, regardless of how it’s seen to be affecting them. A quick google search shows a long list of potential adverse effects when using steroids.
“I’ve been suffering with TSW for nine months now, and so far it’s been the worst year of my life.
“The symptoms are so horrific, no one should ever have to endure it, it leaves people suffering for years as natural recovery can take anywhere from two to five years.”
Mollie explained her experience with eczema and how the TSW developed.
“I have suffered with mild eczema since I was a child”, said Mollie.
“Throughout my life I only ever used very mild steroid creams.
“My mum was advised to use 1% hydrocortisone steroid creams on mine and my brother’s eczema when we were young, but we only needed to use it every now and then.
“During my work as a healthcare assistant, I was having to wear covid masks for 12 hour shifts every day, which started to irritate my skin and cause a rash around my mouth.
“My usual mild steroids didn’t seem to be working anymore, so a doctor that I worked with prescribed me a potent steroid Mometasone Furoate ointment.”
Mollie described how this prescription changed her life.
“I didn’t know much about steroid creams at the time, as I hadn’t previously used them that much, but when I picked up the prescription I was shocked at the size of the tube, it was huge and it seemed very excessive for such a small rash”, said Mollie.
“I began using this once or twice on my face as directed, and it cleared up the eczema virtually overnight, which shows how powerful the medication is”, said Mollie.
“I then continued using that same ointment on any eczema flare ups I had on my arms, neck and hands.
“A few months later I started to notice my eczema patches spreading, and I was getting eczema in places I’d never had it before, such as my chest and shoulders, and random swelling of my eyes and lips with no explanation as to why.
“I started developing new allergies to things that had never caused problems in the past.
“This happened on and off until February 2023, when 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.
“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.”
Mollie described how she went back to the doctors and her symptoms got ten times worse.
“They convinced me to take a course of oral steroids and assured me it would help”, said Mollie.
“The steroid tablets calmed things down for a few days, but as soon as I stopped them, the redness was back and ten times worse.
“The doctor tried to prescribe me Elidel, also known as protopic, but I refused after seeing so many scary stories online about what it does to peoples skin, and seeing videos on TikTok of TSW. It was only then when I realised I was going through withdrawal.
“This happens when your body has become addicted to the creams that doctors prescribe. Symptoms include intense skin redness, bone-deep itch, insomnia, nerve pain, and the list goes on.”
Mollie said that her condition was ignored by doctors, and that she shares her story to raise awareness to prevent anyone else from experiencing this.
“Most serious medical conditions have treatments that are funded by the NHS, but most doctors are still refusing to even recognise this condition due to them being a big part of the problem”, said Mollie.
“I urge anyone currently using steroid creams or oral steroids to research Topical Steroid Withdrawal or Red Skin Syndrome and see for themselves what damage these powerful medications can do to our bodies, even after a short period of time.
“I wouldn’t want anyone else to have to suffer, and I wish I had been warned about this years ago.
“My hope is that this treatment will speed up my recovery from this horrific condition which could have been prevented, if doctors acknowledged the dangers of steroid creams, and I can finally get back to living my normal life, pain free.
“To be suffering every day over something that was preventable, is so frustrating.
“Doctors need to start recognising it more. Luckily the NHS dermatologist listed TSW as my diagnosis back in July.
“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.”
ENDS
