My Healing Journey: Raising Awareness for Topical Steroid Withdrawal
What is a Topical Steroid?
A topical steroid is a synthetic medication that mimics the bodies natural anti-inflammatory response. They can be found in over the counter and prescription medications and come in different strengths and formats such as creams, gels and ointments. Some common ones you may recognize include hydrocortisone, betamethasone, mometasone.
What happens in the body when topical steroids are applied?
Topical steroids reduce inflammation and redness of the skin by temporarily closing down the blood vessels that supply the skin (aka vasoconstriction). This results in temporary relief from redness and inflammation by decreasing the blood flow to the area.
What can happen in the body when you discontinue use of topical steroids?
Topical Steroid Withdrawal has been seen to occur in people who have short or long term use of the medication. Symptoms have been seen in people who have used steroid creams for as little as two weeks. Prolonged use, even if used infrequently can and usually does exacerbate the withdrawal symptoms. The drug withdrawal impacts many physiological systems in the body including the circulatory system, the endocrine system, the immune system, the nervous system and the digestive system.
The mechanism behind TSW remains largely unclear and research is limited, but one hypothesis is that it may be due to a rebound effect caused by the sudden absence of topical steroids. This leads to an exaggerated release of nitric oxide (NO) which is responsible for widening of blood vessels in the skin (aka vasodilation). When the blood vessels are opened there can be a release of normal body fluid (aka plasma) from the skin, resulting in oozing, intense itching/burning, redness, flaking, dryness, cracked skin and swelling.
HPA (Hypothalamic-Pituitary-Adrenal) axis suppression and adrenal insufficiency with potential for adrenal atrophy can occur with long term topical steroid use. This can lead your body to produce too little or too much cortisol. Cortisol is necessary for maintaining normal blood sugar levels. To put it in perspective, if your body doesn’t produce cortisol, you die. Your liver is responsible for filtering your blood and metabolizing drugs as well as nutrients from food. Steroids are one more thing your liver has to process and detoxify in your blood.
When the steroids are withdrawn, your immune system becomes overactive. Mast cells are immune cells that are involved in immune response to things like wound healing and allergic reactions. There is an excessive mast cell activation that occurs in response to the perceived threat, and they release substances involved in the inflammatory pathway to attempt to protect the body. An immune cascade can stem from increased levels of histamine circulating in the blood.
Then the onset of an intense, incessant itch presents. It creates a vicious itch-scratch cycle and can be completely overwhelming, rendering people unable to do anything else. You end up living in the sympathetic “fight-or-flight” nervous system and the ability to down-regulate into a parasympathetic state is very difficult.
The gut microbiome is also disrupted by HPA axis dysfunction. Because of the increased cortisol or decreased cortisol (most likely increased) the immunomodulating cells in the body have a bigger workload. They are then combating the cortisol disruption as well as trying to maintain homeostasis of the gut.
The symptoms of TSW can last for weeks to years and can widely vary from mild to severe depending on the length, frequency, and potency of topical steroid use. The healing time varies case by case.
My Progress
My Story
It all started back in 2016 when I was working at a coffee shop in Victoria alongside rebuilding my personal training business. I started noticing a little patch of eczema on the middle finger of my right hand. This was the first time in my life I’d noticed any red flag skin issue warranting a trip to the doctor. Not having a family doc, I went to the walk-in clinic. The doctor prescribed me a topical steroid cream after a brief conversation and showing him my finger. I have no recollection of his instructions for use or side effects. Needless to say it was a magic cream. It cleared the patch in a day or two.
Over the course of the next 5 years I applied the cream whenever I noticed a flare up. At first it was few and far between on the same small area. Then I noticed the patch was around more frequently. I chalked it up to stress. Then a new patch showed up on the back of my triceps. Followed later by a new patch on my right thigh. During this time I had booked an appointment with a dermatologist, who was frankly completely useless. I was in and out in 5 minutes flat. She gave me a stack of papers describing different eczemas stating it was something I’d have to manage, that there was no known cure and told me to use a heavy duty moisturizing cream: Neutrogena’s Norwegian Formula Hand Cream. I remember feeling completely deflated.
So the one tube of steroid cream (which I luckily never renewed my prescription for) lasted me 5 years. Over that time I definitely noticed that its’ effects were slowly not working anymore. It was difficult because I worked directly with people in a gym environment. Fast forward to 2020 when Covid hit and all of a sudden we had to use chemical sanitizer a billion times a day to clean the exercise equipment and our hands. This was the last thing my skin needed.
I moved from the city to a rural homestead in 2021, hoping that the change would allow me to reduce a lot of external stressors so I could properly heal. While it was true and I no longer had to deal with a lot of stressors that existed back in the city, I had no idea what I was about to experience, that things would turn from bad to worse as the year went on.
I ran out of the steroid cream early in 2021 and moved in the springtime. I was looking forward to healing my nervous system especially from the last year of the pandemic. Unfortunately that summer I began having concerning respiratory symptoms (non-covid related). Shortness of breath followed by inability to sleep due to shortness of breath and coughing. That cycle alone is devastating. I thought I was allergic to something in the environment as we had acquired a beautiful diverse garden at our new home. We also added a dog and a cat to our family which I thought may have been contributing to my symptoms. As the summer progressed, I started doing more research into my symptoms. Then I found it. I just knew before we even opened up the walls. We had mold. And I was right. Mike had the brutal job of cleaning out the mold and rodent droppings found in the walls and ceiling of the addition to our house, which happened to be our bedroom. In a matter of two weeks post clean out my symptoms started to lessen, leaving only an infrequent lingering cough. I was so happy to have gotten to the bottom of it, but at the same time I knew my liver had taken a major hit trying to detoxify my system from the mold (not to mention all the chemicals from the year prior).
But in terms of my skin, things were not improving. What I thought was eczema was progressively getting worse and worse into the fall and winter months. We had switched to wood stove heating which tends to create drier air so I thought that was a trigger. It began to spread all over my arms and legs. Thinking back to when it started in 2016, I thought about what had changed since I had moved to Victoria. I hadn’t been a coffee-drinker prior to working in the coffee shop, so I had a theory that maybe caffeine had been at the root. I was also washing a ton of dishes at the cafe without rubber gloves so maybe the excessive moisture and exposure to bacteria was the culprit. I thought maybe the mold toxicity had compromised my immune system, thus causing the eczema to really flare and spread, plus I no longer had the magic cream to help me.
I turned by attention to what I was consuming. I was determined to take my healing into my own hands and tackle it from the inside out. I eliminated caffeine (yes including chocolate *insert sad emoji here), alcohol, and sugar starting November 1st, 2021. I ordered a nutrition book called The Eczema Diet by Karen Fischer. I started the protocol at the end of November 2021. It started with a 36 hour fast followed by a 2-week elimination phase where I would basically live on potato leek soup, red cabbage and chickpeas. Then I would begin to reintroduce certain foods. The protocol was based on a low-chemical diet, including naturally-occurring chemicals found in plants that I had never heard of before called salicylates, amines and glutamate. Apparently some people with skin conditions can be intolerant or allergic to these natural plant-protecting chemicals. To give you some examples, bananas are high in salicylates, leftover meat develops amines, and glutamate is present in tomatoes and broccoli etc. The protocol also promoted avoiding acidic foods and eating lots of alkaline foods. I learned that mung beans are little alkaline bombs so I began sprouting those and adding them to my cabbage salads. I also learned about carob (which may be the only cool takeaway from this diet). Carob has a very similar taste to chocolate, is naturally sweet and is caffeine-free. I was allowed to drink carob tea which was my daily “hot chocolate” treat. I still use carob powder in baking and I am glad I discovered it.
The timing of the nutrition protocol was rather unfortunate given that my birthday and Christmas were just around the corner and fell in the timeframe that I would be testing foods to see if they were triggers. It was the healthiest Christmas I think I’ve ever experienced. Little did I know I wouldn’t be able to discern any results from this entire protocol because I would later learn that I wasn’t suffering from eczema. I was experiencing topical steroid withdrawal. I can’t quite recall how I figured this out, but it occurred sometime during my hours of online research. I found this video and everything finally made sense. *Viewer discretion is advised*
I felt a combination of relief, rage and deep sadness as I finally figured out what was going on. At this point I was suffering tremendously. My limbs were raw, red, oozing, swelling and flaking all at once. I resembled a burn victim. I saw the images of people whose condition had progressed to affect their entire face and I was terrified this would happen to me. I was also terrified as I didn’t know how long things would continue to worsen before they began to improve. I was devastated and extremely depressed after learning that I would have to suffer for months to get through it.
Your skin is your first line of immune defence and heavily involved in temperature regulation. I found myself hot and cold at the same time, without a fever, but I could not get comfortable to save my life. Perpetually shaking and fidgeting, I was exhausted all the time and very depressed. The absolute worst part was the bone-deep itch. My skin was so itchy it was excruciating. Imagine having the worst sunburn of your life combined with a million tiny needles poking you incessantly all day long. My nervous system was fried. It took literally all of my energy to just exist. Most days refraining from scratching was a losing battle, which you end up beating yourself up about since you know it’s setting your healing back. When you’re that itchy, you just want to feel something else, so you scratch until the pain overcomes the itch, but my skin was so fragile it would break even at the lightest scratch and so it could not make healing progress. I was constantly starting over. It was like trying to paddle upstream and not making any positive mileage. I could not sleep through the night, waking up having sweat through my pyjamas and ultra-itchy. During the days I would have to change my clothes multiple times a day as the raw broken skin would ooze and stick to my clothes.
I joined some online support groups to see what other people were doing to cope. What I gathered was things that helped would be fluid. Something that might help today, might not help tomorrow. There were a few things that I implemented that made me minutely and consistently more comfortable including:
Wearing cotton gloves to bed (and usually during most of the day too)
Only wearing bamboo or 100% cotton clothing
Applying ice packs (this really helped manage the itch pretty immediately, but sometimes the damage was done before I had the strength to get the ice packs on my skin)
Getting a humidifier and keeping the humidity in the house between 40-45% was the sweet spot I found
Eliminating gluten, dairy, eggs, soy, caffeine and refined sugar from my diet
No hot showers/baths as this would amplify the itch and inflammation (and recently no moisture or water whatsoever on the skin)
My skin would no longer retain or create moisture no matter what I tried. In December-January I tried to assist my skin in retaining moisture by taking lukewarm dead sea salt baths (which temporarily relieved the itch for me) followed by a cold shower and slathering myself with any number of lotions, ointments, oils, you name it I’ve tried it. I have an entire shelf with various products that burned a hole in my wallet. I kept seeing people online talk about No Moisture Treatment (NMT). As February approached I decided to try it. I stopped putting anything (including water) on my skin and let it rest from my previous efforts. It began to work. I was noticing the intensity and frequency of the itch was decreasing slowly. This was the first time I thought I could see the light at the end of the very long tunnel. I wouldn’t shower for weeks except rinsing the pits and bits and getting help washing my hair in the sink.
I am also very fortunate to have two of my dear friends who work in healthcare help me. One of whom is a naturopath who I could never thank enough for her help and support through this. She heard me out and used the knowledge she had accumulated to help develop a supplement plan for me, as well as recommend some blood tests to get done. My liver and adrenals needed some serious support and I noticed the benefits after a couple of weeks of religiously taking the supplements. The plan was to help reduce inflammation and get my body’s overactive immune response in check. The next steps would be to heal my gut and make sure good bacteria could thrive in the microbiome and not the bad bacteria. My other friend/angel is a nurse and more recently started her own business as a health navigator. She has been so crucial in helping me navigate the healthcare system including how to find a doctor who could order the blood tests, what questions to ask them and how to read the results of those tests. These ladies have been my lifeline and helped me turn the corner on my healing journey.
TSW affects all aspects of your life. It affects your physical health with debilitating symptoms that leave you unable to carry out everyday chores. Most days it takes all of your energy to simply exist and try not to scratch which is usually a losing battle. You might have a “good” morning, proud that you evaded the dreaded itch and then you feel the rising anxiety as you anticipate the worst for the afternoon. It affects your mental health as you are not able to play sports, exercise with any intensity, hang out with friends since you are so self-conscious, itchy and cannot predict what one minute to another will bring. It affects your emotional health as it tests your self-worth and makes you feel helpless, disgusting and so far removed from yourself. It tests your relationships and I’ve read about countless people who’s partners left them or friends and family didn’t know how to help them. It is a very lonely battle.
As much as I want to heal and forget this ever happened to me, as a person working in the preventative health field I cannot simply bury it. I need to share my story and raise awareness for something that is absolutely 100% preventable. No one should have to go through this hell. I still have a long way to go to be fully healed, but I’m getting 1% better every day. It’s slow, but I’ll take 1% any day.
Despite the hardest year I’ve experienced in my life, there are a number of things I am very grateful for:
I am grateful that I am dealing with this on our dream property on the river surrounded by nature. The best part of my days were going for long walks and just breathing. But I won’t lie it was difficult to truly enjoy the first winter in our new home.
I am grateful that it was winter when I was at my worst. I have had to wear long sleeves and pants all the time so it would have been unbearable during the summer. (Assuming I will continue to improve as the weather changes.)
I am grateful for our animals who made me feel moments of joy amidst the chaos.
I am grateful that I can work from home as I know many TSW sufferers cannot go to work. Most of my clients were none the wiser of my condition, but during our sessions it allowed me to not be focused on my body but instead on teaching movement and helping them with their own health journeys which I’m very passionate about. It was a welcome reprieve.
I am grateful for my friends who I felt like I could talk to as I shared my struggles and were simply just there to listen. It means the world to me. It is a very lonely journey.
I am grateful for my parents for helping pay for the expensive supplements.
And last but not least I am grateful for my love Mike. He made me laugh even when I was at my lowest. He picked up the chores when I couldn’t wash dishes or cook or clean. He never complained about my flake-y dead skin found all over the house or me waking up multiple times a night. He was there when I cried myself into a puddle thinking things would never get better. He washed my hair for me in the sink. He was happy to accommodate all the nutritional changes I made. He was my emotional rock.
Takeaways from this experience
Your body has an incredible capacity to heal. It wants to heal. It just takes time.
You have to be your own advocate for your health. If you’re not satisfied with the answers of the medical doctors, do not settle. There is a place for modern medicine, but steroids are absolutely over-prescribed. There are even hidden steroids in over-the-counter medication. It is a bandaid solution that treats the symptoms not the cause. You have to get to the root of the issue and figure out why it started in the first place. Find a naturopath you trust and work from there.
I leaned in to safeguarding the state of my nervous system by practicing stress-reducing habits that I will continue to uphold (ie. daily deep breathing, daily walks in nature, avoiding the news, shutting down screens and opting to read before bed, journaling to dump my worries and anxieties, and ultimately not sweating the small stuff)
If you are suffering as well, forgive yourself. This was not my fault, nor is it yours.
What happened to me is not WHO I am. It does not define me. It can really test your self-esteem and self-worth. Just remember you are more than your skin.
I will never take clear skin for granted again.
Other resources:
https://www.itsan.org/what-is-tsw-syndrome/#tab-id-2
https://nationaleczema.org/tsw-need-to-know/#:~:text=The%20term%20%E2%80%9Ctopical%20steroid%20withdrawal,stops%20using%20topical%20steroid%20medication.