A woman has shared her horrific experience of topical steroid withdrawal – with her skin becoming so red and raw that strangers assumed it was “extreme sunburn”.
Amy Moldenhauer first began suffering from eczema symptoms when she was a child, with itchy spots often breaking out over her body.
As an adult, she relied heavily on steroid creams, but, in July 2022, decided to ditch the drugs altogether.
But the 28-year-old was not prepared for the withdrawal symptoms to come – which made her skin so sensitive and painful, that she was left “screaming in agony”.
Her skin would flake off so much, that Amy’s mum would be forced to vacuum the bed every day.
“[After I stopped using the steroid creams], my skin went bright red and looked like extreme sunburn,” Amy, a breathwork facilitator, from Melbourne, Australia, told NeedToKnow.co.uk.
“Before I knew it, my skin was flaking and I was shedding an entire dustpan full, at least once a day.
“It cycled between oozing, swelling, burning and flaking.
“Not to forget the red sleeves… when my arms, legs, palms and soles all become red and inflamed.
“I came to the conclusion that I was suffering from topical steroid withdrawal.”
Topical steroid withdrawal (TSW) can occur when a patient stops using steroid creams after a long period of use. Such medication is often prescribed for eczema, atopic dermatitis and psoriasis. For Amy, the pain from withdrawal was so intense, she couldn’t even cope with the feeling of the wind on her skin.
She said: “I was super sensitive to water, movement, moisturiser, fabrics, temperature – everything.
“The pain was excruciating.
“The sensations and burning are so intense that you lose your ability to do many things.
“The first few months I was mostly bed-bound, wrapped in towels.
“I had no ability to regulate temperature so would either be freezing cold or sweating.
“You don’t sleep as the itch is so deep, and most of your day is spent scratching until you bleed as the pain of cutting open the skin is better than the itch.”
Amy has also suffered from nerve pain, enlarged lymph nodes, oedema, eye dryness, swelling, skin atrophy, head and body hair loss, insomnia, extreme fatigue, depression and anxiety.
After eight months of suffering from the withdrawal, Amy moved to Canada to be near her mum, Susan.
She said: “It got to the point where she had to spoon-feed me in bed as I couldn’t move.
“My daily routine was being pushed out of bed as I screamed or cried.
“My mum would undress me, flake my skin off, change my gauze, re-dress me and vacuum the bed as it would be coated in piles of skin, then I would go back into bed.
“Moving would crack open my skin and it was excruciating.”
Emotionally exhausted from the ordeal, Amy’s mental health also suffered as she grieved the ‘normal’ life she was missing out on.
She said: “I felt like a burden to everyone and just a shell of who I normally was.
“I entered a really dark place of depression and at one stage would have a daily panic attack, mostly at the thought of moving or any time I moved.
“My mum was my saving grace, as she would hold me through all my panic attacks, cook for me, feed me, change me and sit with me through the night.”
Thankfully, in August 2023, Amy’s skin finally started to improve. She is now almost completely healed and looking forward to getting back a to ‘normal’ life.
Now, she is sharing her story to encourage others to ask for help and to vary of steroid products.
She said: “The best thing you can do is give your body time, rest and accept support from those around you.
“But, for me, stopping obsessing over fixing my skin was when things started to change [as it helped me mentally cope with the pain].
“I highly recommend breath work, your nervous system is going crazy and breath work is the best way to regulate this.
“It also was key for me in managing pain, as well as managing my extreme emotions.
“Believe in yourself and your ability to make it through.
“You will feel crazy at times, completely alone and [as if] no one has any answers – but I promise you it does get better.
“To anyone going through [something similar]: ask for help.
“Get the support you need and give your body the time to recover.
“And do your best to not scratch.”
