Graphic pictures reveal the horror of eczema sufferer ‘skinned alive’ by addiction to steroid cream
AN artist suffered withdrawal symptoms that left her “looking like a burns victim” and in too much pain to wear clothes after becoming addicted to steroid cream for eczema.
Juli-Anne Coward has spent decades battling topical steroid cream withdrawal (TSW), also known as red skin syndrome, which has caused agonising flare-ups, sore, cracked and peeling skin every time she tried to wean herself off the creams.
At its worst Juli-Anne, from Leominster in Herefordshire, said her entire body was covered in raw patches and oozing boils.
But now she has weaned herself off the creams for good.
She said: “The longer I am without them, the better I become.
“I’m definitely seeing progress. I managed a four-mile walk the other day, which is something I haven’t done in years.
“When I first came off them, my body went through hell but I finally feel like I’ve turned a corner.”
Juli-Anne, 50, was first diagnosed with eczema when she was just three months old and was prescribed a topical steroid cream to calm her itchy skin.
Throughout her childhood she was plagued by illness and when she was nine had an allergic reaction to penicillin which caused a build-up of fluid in her lungs.
Medics prescribed a six-month course of cortisone injections – a type of steroid hormone – to help her regain her strength but as soon as they stopped her skin went “completely haywire”.
“My eczema went absolutely crazy, and I developed the worst acne you’ve ever seen,” she recalled.
“The spots were almost like boils – far beyond typical teenage blemishes. They’d crack and bleed.
“I had one on my leg which was so painful, I couldn’t even put my foot down.
“My confidence was absolutely gone. I hated PE at school, hated showing off my legs. I missed out on a lot.”
By the time she reached her 20s, Juli-Anne was using a low dose steroid cream every day.
It cleared her skin and, slowly, her self-esteem began to improve.
But if she ran out, or forgot to apply it, her skin would flare up again.
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She said: “I lived in fear of running out of cream. I could never go anywhere impromptu just in case.
“It almost felt like an addiction. If I didn’t apply it, my skin would start to burn.
“The only way I can describe it to people is that it feels like my clothes are made of nettles and full of wasps.”
In her 30s Juli-Anne had a particularly bad reaction after doctors suggested she try a cream commonly used to treat scabies.
Her skin began to shed, peel and bleed, to the point where it was too painful to even wear clothes, leaving her housebound.
Over the next few years Juli-Anne saw various doctors but none seemed to be able to offer a permanent solution to her problem.
In 2016 she decided to research her problem online and came across an online support group called ITSAN – the international topical steroid addiction network.
Reading through posts, she became convinced that she, too, was suffering from the condition.
She recalled: “It was really emotional. I sobbed and sobbed, because I couldn’t believe this was happening to me.
“I was terrified at the prospect of what was to come, too, but I knew I had to come off the creams to stop this once and for all.”
A painful skin condition that leaves the skin raw, cracked and bleeding
Red Skin Syndrome, also known as Topical Steroid Addiction or Topical Steroid Withdrawal, is a condition that can arise from the use of topical steroids to treat a skin problem, such as eczema.
RSS can also arise from topical steroid use in individuals with no prior skin condition; such as with cosmetic use for skin bleaching or to treat acne, or in the case of caregivers who neglect to wash their hands after applying topical steroids on someone else.
RSS is characterised by red, itchy, burning skin that can appear after ceasing topical steroid treatments, or even between treatments.
Symptoms:
These can fall into two categories - those that appear while using creams and those that appear when not.
- Rebound redness between applications
- Rashes spreading and developing in new areas of the body
- Intense itching, burning, stinging
- Failure to clear with usual course of treatment, requiring a higher potency topical steroid to achieve progressively less clearing.
- Increased allergic response
Treatment:
In order to treat the condition, the use of steroid creams must be stopped.
The condition resolves over time, but no medications or methods of treatment have been proven to speed up the healing process.
Source: Itsan - the red skin syndrome support group
After slowly lowering her dose, Juli-Anne stopped using steroid creams for good in September 2016.
At first her skin was in agony but over time she slowly began to improve.
Juli-Anne still wears her clothes inside out so the seams don’t irritate her and wraps her skin in bandages every day to protect it.
But she sheds far less than she used to and her skin does not weep as much.
Juli-Anne, who has been with her partner Carolyn, 54, for 20 years, also uses gentle, natural products on her skin instead of soaps that can be harsh on skin conditions like eczema.
Around two weeks ago she was also told by doctors that her health woes have caused osteoporosis, so she’s taking calcium and vitamin D to help protect her bones.
She said: “I want to say to others that I understand coming off steroid creams is scary, but support is out there.
“Arm yourself with as much knowledge as you can, listen to your body and do what’s right for you and your skin.”
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