Topical Steroid Withdrawal is an iatrogenic syndrome – meaning it’s caused by the very topical steroids prescribed to treat common skin conditions, like eczema. It presents with many symptoms – not only on the skin, but also the deeper systems of the body.
Unfortunately, TSW is still not widely recognized within the medical community. Because of this, many people are left without a diagnosis or clear answers – forcing them to research and advocate for themselves.
itsan.org
I used topical steroids from ages 5-25, filling dozens of prescriptions over the decades to treat eczema and skin inflammation. Triamcinolone, Betamethasone, Tacrolimus, to name a few.
Using these medications periodically and as prescribed over the years modulated my immune system and skin physiology so significantly, the process of withdrawing off of their use about damn killed me.
I am now over 7 years into being completely free of their use. The first 3 years were filled with raging skin inflammation and waves of horrors. The last years have all but stunned me with the responsive, natural, express repair that my skin and health has made now that the path has been cleared. (or, more honestly, now that I’ve picked up A map.)
My body and spirit are stronger than they ever have been and I am passionate about sharing my preventable experience, contributing my voice to the growing chorus speaking on the risks of topical steroids.
Going all the way back to the beginning - I have memories of my Dad laying me out on the family dinner table nightly as a toddler and covering me in anything occlusive and soothing, to moisturize my dry skin. Something my paternal grandmother had also struggled with in her life from an early age. To my parents credit - they tried everything they could, from naturopathic regimens to steroidal tapers. But my skin was talking to me long before I developed the skills to understand.
During recess in elementary school, my skin ached and I often overheated. Learning early on that sweat on my skin was a major threat to my comfort.
I grew up in a house full of rescue animals. My exposure to them worsened my immune responses and skin strength - but try telling that to a 10 year old me, I suppose.
By middle school, I was likely clinically dependent of topical steroids to quell flaring symptoms by this point. They were so effective esthetically. My parents tried anything new to mitigate my symptoms as soon as the most recent angle failed. There was always another appointment on the schedule. I found serendipitous relief on the local canoe and kayak team, in the form of salt water, cold temps, strength training, and cardiovascular exercise.
Halfway into high school, my Dad was given a terminal cancer diagnosis and I found myself living on my own, working, and trying to graduate on time. I recall this being a time where I ostensibly let my hands loosen on the wheel of my own health. I developed a habit of moving around stresses, rather than through, and the disconnection between me and myself only widened.
Through college and the first years of my client-facing career in the boat business, I used topical steroids increasingly more often just to keep the train of life moving. In hindsight - there were good days, bad days, whatever, it was just one big mess of inflammatory symptoms the entire time.
My faith in medicine was strengthened when an experimental stem-cell transplant saved my Dad’s life, bringing him back from death’s door.
When MD, after MD (after MD) assessed me and concluded time after time that I needed more corticosteroids, I looked elsewhere for the culprit of these inflamed symptoms I intuitively knew I should’ve graduated out of already.
By the age of 24. flares became more frequent, the topical medications were noticeably counterproductive beyond one night of sleep. And while opportunities and the fruits of my labor laid all around me, I was finding myself increasingly ineffective in life, staying healthy, and staying sane.
I visited so many specialists, every one pointed out the “unlikelihood” that I was becoming unresponsive to the medication and more, stronger scrips were pushed. Every last shred of advice I could pay for was just bandaids. It became obvious to me that I’d stayed in this lane too long.
My skin was worse than ever, the dryness and inflammation lost any patterning or reasoning that I was familiar with. The shape of my inflamed face looked different day to day, hour to hour. I knew something had to give.
I don’t remember the exact video or videos, but shortly after downloading TikTok in 2018 I stumbled upon the topic of topical steroids and TSW. A watershed moment. These people looked like me, maybe even worse, which was hard for me to imagine at the time. My understanding of what was really going on started clicking.
I realized that no matter how conservatively I had convinced myself I used the steroidal meds - my own skin was addicted. The time for personal responsibility and discernment was at my front door because my skin eventually demanded my minds attention without mercy.
Elimination dieting has been an active part of my life, my entire life. I had long been convinced my skin issues were a result of some ambiguous food intolerance. Similarly to how dirt, pollen, and animal dander was always a potent disruptor to my fragile skin. But - even all that effort bore no real fruits in terms of systemic mitigation. My unique immune system was the original complainant and I needed to get there.
At the age go 25, name it, I’d likely tried it to tame my growing list of eczematous symptoms. Medications, lotions, baths, diets, naturopathic regimens, endless advice of others. The natural end to my old approaches came because the noise of their ineffectiveness was deafening, I was SO itchy and SO fearful of the damage scratching caused. So, in the warm spring I stopped any and every medication, stopped drinking any alcohol, stopped working too much, and stopped putting myself in stressful situations. These guidelines are still pillars for me today.
It is hard to understate the helplessness that proceeded. If you get it, you get it. My skin went haywire without the topical steroids to calm down the flares that eventually just ran into each other, seemingly never ending there for a while.
My skin, its strength both physically and physiologically got worse before it got better. Extreme dryness led to bacteria vulnerable rashes, and vascular patches would appear and roar like the attention-seeking inflammation that it was. The steroids and itch-scratch cycle had thinned my skin structure and barrier so significantly in places that trying to coerce epidermal behavior was an hour by hour process.
The itch under my skin, particularly in areas like my face, neck, wrists, and feet was bone-deep and existed 24/7/365 for 3 full years. And although I never used steroids on my face or neck, the inflammation and system disruption had become systemic, so my skin reflected as much.
Putting the ever-present physical pain and discomfort in to publishable words is something I’ve yet to formulate. Nothing seems enough. Tormenting. I said the word ‘burning’ out loud in unrelated conversation years after my skin had healed and burst in to tears. Things take time to process. TSW is called the ‘skin of fire’ disease - and not for nothing. It is a special, immobilizing cruelty.
Insatiable itch is something that makes you question, REALLY question your own mental fortitude. I would ebb and flow in believing my power of thought could somehow override all of the nerves that were signaling just beneath my skins surface. It was madness at times. I can validate much of the impeding struggle.
Adding to that, I experienced a few rounds of telogen effluvium and hair shedding, as delayed responses to peaks of inflammation. The cyclical distress of it all was honestly nuts.
I now see the scorched-Earth path that was bestowed upon me. Being sick like that is wildly confronting. Every stone had to get turned over. Everything and everyone around me was touched with this fire, too. It either burned into nothing or was forged to be a hundred-thousand times stronger than before. A gift.
The full body pain overstimulation and prolonged lack of comfort changed almost every thought pattern I’d ever had - mostly for the better. The agony dwarfed stresses and inconveniences in my orbit. Gratitude overwhelmed me more than anything.
And, in time, my skin has healed. Eliminating the overcorrection I had been dosing myself with for so long was like waiting for a dense and toxic fog to raise. I’ve found calm, navigable waters in return for my endurance. In life and in health. A new luxury for me. My skin’s integrity is ever-rising, complexion is even and increasingly glowy-er by the week. I like to say the ‘glue’ is back, it doesn’t flake away without cause, and I’ve exploded open channels to interpret what my skin needs to maintain homeostasis. Grief at what’s been lost turns to gratitude. My hair and eyebrows have also returned with a vengeance. Each day the brain space I allot to my healing skin and itch that comes up decreases, and I feel myself emerged from this insidious storm.
Through this journey, I’ve graduated from 2 skin science programs, and have traveled to both Asia and Europe researching effective topical modalities for particularly compromised skin. Necessity breeds ingenuity. I really love the topic of skin, not just my own. It is an organ that regenerates itself - incredible!
Now, I am building my practice as a Licensed Master Esthetician in the Pacific Northwest. Strengthening the skin in every sense and making people comfortable is my crusade.
The glow is growing again.
Much more soon, xx Quinn
