What is Topical Steroid Withdrawal?
- Jennifer Powers
- May 18, 2022
- 5 min read
Updated: Jun 7, 2022
A Debilitating, Preventable Condition
Wait… so the medications that were prescribed to HELP my eczema can actually leave my body addicted to them? Is this real? What is Topical Steroid Withdrawal??
TSW?... This can’t be a real thing… can it?...
It was just a little over 6 months ago that I hit an all new level of frustration with my skin. My anxiety and irritability were so high that I decided to start making doctor appointments left and right to try to get some answers.
A couple of months of confused looks, dermatologists and doctors giving me the same wrong diagnosis of this being just “really bad eczema” flaring up, I was done.
This was not really bad eczema. This was something else…
I knew that I was my own best advocate for myself. My health and well-being are never going to be a top priority to anyone but myself.
It was time to take matters into my own hands.
I took to the internet and scoured websites and blogs and social media accounts and anything else I could find that would explain this strange flare up that was causing me so much discomfort and stress.
“Healing Eczema & TSW Naturally” read an instagram bio that I stumbled across. TSW? What is Topical Steroid Withdrawal? Never heard of that, but let’s see what this is about…
Not through any of the doctors or dermatologists I asked opinions of. Not the homeopathic doctor, or the naturopath, the alternative medicine doctor. Not my primary care physician, or the urgent care doctors I saw asking for steroids to help with my massive flare up. Not anyone.
No one had ever mentioned Topical Steroid Withdrawal Syndrome to me, it was weird. Did they not know about it? Or were they afraid to bring it up to me?
That one instagram bio and a couple of posts on it is all that it took to have me going down the rabbit hole.
I couldn’t believe what I was learning. So many people looked just like me in pictures. I had no idea that my skin had become addicted to these drugs and that is why they were not working for me anymore, even worse, they were making my skin go into a flare frenzy.
I wasn’t sure who was more angry, me or my skin.
Topical Steroid Withdrawal was not only real, it was a horrifying reality for so many, and now, I was among them.
After checking many reliable sources, studying the side effects and symptoms, comparing photos and videos of myself to other sufferers, it was clear.
My body was going through Topical Steroid Withdrawal. (I talk about this in Episode 1, 2 and 3 of my podcast, TSW Journey To Healing)
And what a nightmare it was/is.
So, What IS Topical Steroid Withdrawal?
The non technical definition? It’s hell on earth.
But to be a bit more specific...
Topical Steroid Withdrawal (TSW) Syndrome is an iatrogenic condition that is caused from the use of topical steroids to treat a skin problem, such as eczema. But someone without prior skin problems can also be affected by TSW. Cosmetic use of topical steroids used to treat things like acne or hyperpigmentation can also suffer the consequences and experience TSW. And how about mothers who put medicated ointments on their babies? Or Put OTC creams like cortisone on for bug bite relief? Yep. That can get you into Topical Steroid Withdrawal too.
It is agonizing and debilitating and what’s so scary is that no one is talking about it!
TSW is still barely known, and therefore, there are very few studies on it. But, I'm on a mission to change that.
Topical Steroid Withdrawal is sometimes also referred to as Topical Steroid Addiction (TSA) or Red Skin Syndrome (RSS), and although these terms are often used interchangeably, they do have slightly different meanings.
This article is going to focus on What is Topical Steroid Withdrawal, but for your reference and education, I’ll explain what the other two can be defined as.
Simply put, Topical Steroid Addiction (TSA) is when you know you’re in trouble, as it’s when your TSW journey to healing will begin. Your skin builds up a high tolerance to the topical steroid, starts wanting more of the drug to achieve the same results and benefit, and when you deprive the skin of the drug, it rebounds and goes into withdrawal.
Bet you didn’t think your body and skin could become a drug addict without you knowing did ya?
The “flare up” that occurs once you lessen the dosage or stop the drug all together gives you the symptoms you had experienced before taking the steroid, and often times, as is with mostly all Topical Steroid Withdrawal sufferers, the symptoms have worsened by a lot (and that’s a huge understatement).
RSS, or Red Skin Syndrome is something that can happen as a steroid withdrawal symptom. As the name states, your skin becomes inflamed and turns red because of the vasodilation of capillaries. The red color of the skin is accompanied by a very painful burning sensation.
Here’s a picture of my “red sleeves” which are very typical for those in TSW.
In my opinion, the name should be changed from Topical Steroid Withdrawal Syndrome, to Steroid Withdrawal Syndrome, because both topical AND oral steroids can cause this condition. Creams, lotions, ointments, oils and pills, all accessible either over the counter, or prescribed from a doctor, these medications are potent and can be very dangerous, clearly.
There are MANY symptoms of TSW, the most common being relentless itching, burning, weeping, flaking, shedding, peeling, spreading, swelling, redness, wrinkling, thin skin, pus-filled bumps, cracking, itching, nodules, swollen lymph nodes, pain, insomnia, hair loss, shivering thermoregulation, fatigue, depression and more.
After a while (and sometimes a very short while) the application of steroids begins to work less and less and the original problem comes back and spreads to other areas of the body. For me, when this happened, I got the misdiagnosis (from multiple docs) that what I was experiencing was worsening eczema.
Topical Steroid Withdrawal is not just a skin condition.
It’s so much more than that.
Topical Steroid Withdrawal is debilitating physically, mentally and emotionally. It can leave you bedridden, jobless, hopeless and depressed.
The good news? You can now stop asking yourself 'What is Topical Steroid Withdrawal' and start your healing journey!
Hopefully you’ve now got some answers to those burning questions about what you, or a loved one, is going through. While there are currently no proven treatments to speed up the Topical Steroid Withdrawal recovery, there are things you can do to help comfort yourself and lessen some of the severity of the symptoms. Check out both the Body & Skin and Health & Wellness pages of this site for some of my top suggestions that have helped me and many others. You can also seek comfort from contacting a supportive doctor to help you navigate your symptoms and getting prescribed things that can help with pain, sleep aid, itch management, anxiety, infection prevention and more.
My prayers are with you on this heavy journey. It won’t be easy, but you will see this as a time in your life that you were the most brave and courageous, and, remember, you are SO much stronger than you think.
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Email: tswjourneytohealing@gmail.com
You Are So Much Stronger Than You Know,
-Jen
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11 months without steroid cream, continues to be torture to say the least, but hanging in there. I thought I was a warrior as I'm pushing 60 and run 7 to 8 miles several times a week. That is nothing comparing to making my way through this. Awesome that someone like you cares enough to get the word out because my doctor and dermatologist knew nothing about this. I hope we can change that! God bless!