OPINION: Northern Advocate reporter Brodie Stone has suffered from eczema her whole life. But it’s now morphed into something different that’s not widely recognised. She tells her story.
On July 30 of this year, my dermatologist validated months of pain and suffering.
Topical Steroid Withdrawal was real - and I had it.
I had sat 10 minutes earlier with my hands anxiously clasped together, feet fidgeting and skin prickling while my partner and I waited for an appointment I’d been referred for last year.
My inner monologue was running over what to say, wondering whether I should bring it up or wait to see what they suggest.
“What if they think I’m crazy? What if they just say it’s a bad case of eczema? What if they recommend steroids again?”
That last one made my heart skip a beat and my skin prickle even more.
I reached for my wrist and started itching, my partner, who was seated to my left automatically placed his hand on mine.
It’s a silent command, one I’ve grown both grateful for and sick of over the last year.
Medical professionals told me it was just a “bad case of eczema” or having an ongoing allergic reaction.
I’ve had blood tests; my hair follicles have been analyzed and I’ve been prescribed countless topical and oral steroids to fix the issue.
As it turns out it was the treatment that was causing a bigger problem.
Topical Steroid Withdrawal is an umbrella term for a condition that is highly under-researched and rarely recognised.
According to DermNet the condition is a “rare rebound reaction” in patients with topical steroid “overuse” that occurs after discontinuation.
Topical corticosteroids are an anti-inflammatory cream or ointment used to treat skin conditions like dermatitis or eczema.
They can work wonders and are a valuable tool in the pocket of medical professionals - and considered mostly safe.
I’ve been using them on and off since the age of around 12.
“Just dab a bit” doctors would say of my inflamed inner elbow.
Over time the flares would get worse, and I’d come back to the doctor and complain the cream wasn’t working.
It was probably my eczema suffering from a new trigger but they’d just increase the steroid potency.
A bandaid approach if you will.
I didn’t like using steroids and even then I could feel my reliance on them was starting to build. I felt like a drug addict - but I needed the itch to stop.
I saw a shift last year when small patches that didn’t look or feel like eczema appeared in previously unaffected places.
Anything but a high-potency steroid would burn.
The flare would go away – but a week later it would return - this time far worse.
Showers - even cold ones - felt like acid.
I suffered from what has been characterised by some as “red sleeve syndrome” where from wrist to elbow my arms were bright red and puffy.
My knees would get so inflamed that it hurt to walk, and my fluid retention was so bad that my face and body looked as though they had been pumped up like a balloon.
My skin was so delicate that the slightest scratch would tear it open, resulting in two weeks of being unable to straighten out my legs or arms for fear of ripping my skin open.
I referred to my doctors countless times and even went to the Emergency Department twice - upset, confused, and sore.
They would prescribe me oral steroid prednisone while looking at their clipboard, rushing me out of their busy ED.
Something didn’t sit right with me - so being the journalist I am - research was afoot.
The words “Topical Steroid Addiction” glared at me from the screen.
I cautiously clicked on the link, heart-thumping, and read through the bullet points of symptoms, mentally ticking each one.
It was clear I was trapped in a treatment cycle.
I bought my creams everywhere I went for “just in case” moments and not once over those years did a doctor question my frequent use.
With much trepidation, I approached my GP, concerned I was trapped in a treatment cycle.
He warned me it would be a painful process to withdraw but encouraged me to keep in touch.
In an ironic twist, he made sure to mention the steroids available in New Zealand wouldn’t touch his psoriasis-prone skin.
He gets his shipped over from another country with better options where he is a resident.
I weaned off prednisone over the space of a week and stopped applying topicals immediately.
Within that time my face had swelled so much that I couldn’t speak. It would flake, swell, and flake again in a sore and unaesthetic cycle.
I would wake in a patch of dry skin four times a night, brush out the bed and then wrap up in a tight ball to stop myself from itching.
I spent a month off work, couch-bound, wrapped up in blankets, shivering and weak thanks to my adrenals being completely stuffed from years of steroid use.
I went through multiple changes of clothes a day and had to change the bedding every two days not because of sweat, but the constant weeping and flaking.
I barely left the house and mentally I was the lowest I’d ever been.
To this day I’m still experiencing flares but after having my condition confirmed by a dermatologist I’ve chosen to go on immunosuppressants.
I’ve seen improvement in just a week.
It’s a relief, but I can’t help but feel robbed of the last year which at 24 years old felt full of suffering.
My experience has marred precious memories with my 5-year-old daughter, and the simplest act of love – a hug – was agony amid my withdrawal.
When I look in the mirror, I see someone who was victimised by a system that places quick fixes over the well-being of patients.
I see an example of why there needs to be more research done into the harmful effects of corticosteroids.
I see someone who was failed.
Brodie Stone is an education and general news reporter at the Advocate. Brodie has spent most of her life in Whangārei and is passionate about delving into issues that matter to Northlanders and beyond.