WHEN Nicole Mackenzie started using topical steroids for her eczema, she hoped it would solve her skin complaint.
Instead, the 26-year-old said her skin was burned so badly by the creams, that she no longer recognises herself in the mirror.
Over a year ago she started to use the products to treat her eczema, but within six months the steroids had 'eaten away' her skin 'beyond repair'.
It's gotten so bad that she has to apply moisturiser every 30 minutes, and in October, she was forced to move back in with her mum in order to help her manage the condition.
She said she is struggling with 'red skin syndrome', which is also more commonly known as topical steroid withdrawal.
Nicole, from Glasgow, Scotland said she was once an 'outgoing and confident' person, but now feels as though she is a burden to others.
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"I've been in so much pain some days I've genuinely just not wanted to be here anymore. I've felt my skin is so damaged beyond repair that I just couldn't live my life like this forever.
"When I look in the mirror I'm just heartbroken. It's just not me anymore. It's like I'm looking at another person. I don't think 'oh that's Nicole'.
"I look so different, my mindsets so different, I feel so different, there's nothing about me that's my old self."
She added that the condition is ten times more painful than eczema and that some days, it's so severe she can't walk due to the tightness of her skin.
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"I have to reapply moisturiser every half an hour. I wear clingfilm on my arms to help keep the moisture in.
"If I was just to put moisturiser on, it would just sit on top of my skin. The clingfilm lets it absorb more."
"It's not like a rash, it's like yellow weeping fluids coming out of my skin and causing it to crust all over.
"It's all over my body. Everywhere is awful, but my face is the worst."
WHAT IS TOPICAL STEROID WITHDRAWAL?
The term ‘topical steroid withdrawal’ (also referred to as topical steroid addiction or red skin syndrome) refers to a constellation of symptoms that may emerge in the days and weeks after a person stops using topical steroid medication.
The potentially debilitating symptoms of TSW can include:
- burning
- weeping
- flaking
- shedding
- peeling
- spreading
- swelling
- redness
- wrinkling
- thin skin
- pus-filled bumps
- cracking
- itching
- nodules
- pain
- insomnia
- hair loss
- shivering
- fatigue
- depression
- and disability.
Due to the severity of the condition, Nicole can't wear normal clothing and struggles to shower due to the water pressure against her skin.
"It is like a disability. It completely disables you from doing anything. You cannot live a normal life and that needs to be recognised.
"I've had my whole life taken away from me because of a cream and the damage it's done to me.
"If I'd have known the chance of this, I'd have chosen my eczema any day. I wouldn't have ever chosen steroids if I'd known the pain it could cause."
Despite her struggles, Nicole says that she often is able to get support from her friends and family, and from the online community she has built.
"For anyone dealing with topical steroid withdrawal, it will have had a huge impact on their mental health. It needs to be recognised.
"There's so many people out there suffering. It's not just a rash or a bit of red skin.
"I would not wish this pain on my worst enemy," she said.
After several visits to the GP and referrals to the dermatologist, Nicole has now been prescribed an immunosuppressant drug.
While it isn't a cure, Nicole hopes it will stop her skin from flaring up as much and that by her brother's wedding in May, she will be well enough again to be a bridesmaid.
Nicole said: "I'm now on methotrexate, an immunosuppressant drug.
"The medication suppresses your immune system so it isn't as active and any toxins are being reduced and not going out of your skin and causing such a bad flare.
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"The doctors say to give methotrexate at least six weeks before you start seeing any sort of difference, but that's basing off curing eczema, rather than topical steroid withdrawal, so it might take longer.
"My brother's getting married in May and I'm a bridesmaid so I'm just hoping that it'll work the same."
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