Julie Ramsey has revealed how she was left bedbound, unable to wash and contemplating suicide after suffering nine months of agonising topical steroid withdrawal.
A woman was left bed bound, unable to wash and suicidal for nine months after getting withdrawals when she stopped using steroid creams to treat her eczema.
Julie Ramsey, 48, was prescribed steroid creams by her doctor in childhood, to treat her eczema. But after stopping the creams in October 2020, Julie, from Aberdeen, faced nine months of “excruciating pain” which left her bed-bound after she battled a condition known as topical steroid withdrawal (TSW).
TSW is when a person gets severe reactions when strong topical steroids have been used for a prolonged period, usually more than a year, to treat eczema.
After stopping the creams Julie, who holds two Guinness World Records for her historic 18,000 drive from the North to the South Pole in an electric car, was left blistered and covered in open wounds.
Julie was left bed bound, unable to wash or sleep, and even contemplating taking her own life as a result of the ongoing pain all over her body and face.
After nine months of “hell”, Julie’s symptoms finally began to ease, and she’s raising awareness of TSW this Eczema Awareness Week as she shares her harrowing story for the first time in her debut book ‘Driven to the Extreme’.
Julie, public speaker, said: “I looked like a burns victim and had open wounds bleeding and weeping from every part of my body.
“Where there was skin there was pain.
“I didn’t know when it was going to end.
“I was in extreme agony, excruciating pain, I didn’t recognise myself anymore because of how I looked.
“I was trusting my gut instinct that what I was doing was right. But I kept thinking, ‘Am I going to get an infection? Is this going to get worse? When will this end?”
Julie stopped the steroid creams after watching a YouTube film about eczema sufferers whose condition had eased once they came off the creams.
Julie spent months in agony, covered in weeping burn-like sores, and she spent 24 hours a day in bed being cared for by husband Chris Ramsey, 49, as her skin ‘fell apart’
She was unable to wash for months – fearing water touching her skin would irritate it further and cause excruciating pain, exasperating the redness and unbearable itchiness.
The pain became so intense she considered taking her own life. Doctors were unable to help, admitting they knew little about the condition, and instead advised her to start using the cream again, she said.
Julie said: “My skin was in pieces. I was in excruciating pain around the clock.
“I would wake up and my bed would be soaked with blood, ooze and flakes.
“I would just lie there in tears every day.
“I couldn’t do anything. My confidence was shattered; my appetite was gone.
“The yo-yo effect of my cortisol levels from the withdrawal meant I was awake with insomnia during the night.”
TSW was only recognised in 2021 by the MHRA – the UK’s medicine watchdog – as a reaction to the long-term use of steroid creams – in particular those containing cortisone or hydrocortisone – but not as an official condition with a diagnosis and recognised set of symptoms.
Before enduring TSW Julie suffered from bad hay fever, was allergic to cats and horses and had to use lip balm every day. Now those allergies are nowhere near as bad, and she no longer uses lip balm and uses antihistamines a lot less.
Julie is now keen to raise awareness of the possibility steroid creams can aggravate eczema rather than cure it.
And in turn, possibly helping millions of people around the world improve their quality of life by overcoming their own skin condition.
She said: “I am convinced it was the cream all along. It may be the case that millions of eczema sufferers are making their condition worse by taking steroids.”
The extreme of overcoming TSW gave Julie the confidence and determination to join her husband on his mission from the Magnetic North Pole high up in the Canadian Arctic to the South Pole in Antarctica in their Nissan Ariya SUV between March and December 2023.
This saw them secure double Guiness world records for The First Expedition by an Electric Car from the Magnetic North Pole to the South Pole and The Longest Journey by an Electric Car in Antarctica.
She said: “Having endured the hell of TSW, you develop a warrior-like mentality and feel empowered to conquer anything because nothing can be worse than the sheer pain.
“It is through overcoming this adversity, it gave me the mental strength, courage and determination to support Chris 100% on his Pole-to-Pole electric vehicle (EV) Expedition as a way of gratitude and thanking him for saving my life, being my saviour and supporting me so selflessly during the darkest moments of my life. He was incredible.
“Without Chris as my support and caregiver, I would not have survived and come out the other end feeling stronger and empowered.
“Caregivers are often not given enough praise for their support. If it wasn’t for Chris by my side, I would not be here and the person I am today.”
Dr. George Moncrieff, a former GP who regularly lectures on dermatology topics to primary care and occasionally secondary care audiences, said: “”None of us really understands what is going on with TSW and patients are often left bewildered, abandoned and unsupported.
“The problem is the medical profession in general has been disastrously blinkered to TSW in the past.
“”There’s no doubt many patients have failed to use steroids adequately because the potential risks are constantly highlighted.
“It is notoriously frustrating to see someone with a steroid-responsive skin condition that is not controlled simply because the patient refuses to use a topical steroid.
“However, TSW is different and in this condition, further topical steroids would be a disaster. The problem is that this condition is often not recognised, it’s therefore not diagnosed and as a result it is assumed to be rare and often dismissed.
“TSW is a ghastly condition. It often destroys families and relationships.
“Patients will see little of their children for a few years, they will barely be able to get out of bed, let alone clean or wash themselves.
“Sometimes even water on the skin can be agony. They won’t be able to sleep and they can’t work.” Eczema UK and The British Association of Dermatologists refused to comment.
Julie and Chris titled their book Driven to the Extreme because, Julie endured the extremes of battling TSW, they went to the extremes of the earth to test the capability of electric vehicles, in doing so endured extreme off-roading terrains, experienced extreme temperatures, from -39C in the Arctic to +49C in the dessert, and not to mention testing the limits of their marriage too.
Julie added: “It is going through hell, adversity, sheer pain and suffering that you as an individual become stronger and believe you can do anything – if you can overcome and survive TSW you can survive anything like conquering going from Pole to Pole in an EV.”
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