If you’ve had any form of Skin Condition most likely the first and maybe even only treatment you were offered was steroids.
For those who don’t know “Topical Steroid Withdrawal Syndrome (TSWS), also known as Topical Steroid Addiction (TSA) or Red Skin Syndrome (RSS), is a debilitating condition that can arise from the use of topical steroids to treat a skin problem, such as eczema. This condition can also arise from topical steroid use in individuals with no prior skin condition; such as with cosmetic use for skin bleaching or to treat acne, or in the case of caregivers who neglect to wash their hands after applying topical steroids on someone else” – @itsan.nonprofit
The very creams prescribed to help us heal are causing us stress and damage. Constant questions circle our heads like ‘will I get TSWS’ there is also this guilt culture surrounding steroid use and often the what-ifs leave more anxieties and stress than help.
Whilst not everyone who uses topical steroids will develop TSWS. It is unclear why some individuals experience TSWS secondary to topical steroid therapy and why others do not.
A lot of people label TSWS sufferers as people who misused their steroids. I want to make it clear – you can do everything right and still get TSWS and you can do everything wrong and not get it…
Topical steroid withdrawal plain and simple needs more research not only for its sufferers but to stop its potential future sufferers. So lets start by sharing our journeys to raise awareness!!
Over to Jay ⬇️
My journey with topical steroid withdrawal (TSW) has been a long and difficult one. It all began when I decided to stop using the topical steroids that I had been using for years to treat my eczema. I would always be prescribed these (corticosteroids) by my GP and derm and I had always been told that these medications were safe to use in moderation. However, as I began to research more about TSW, I realized that my body had become dependent on them.
I kept getting weird unexplainable symptoms for 3 years prior, especially on my face. It would blister, swell, burn and become red and blotchy. I couldn’t understand what was causing it as it was nothing like my normal eczema. I went through an extensive process of elimination of things in my day to day life to try and find the route cause and carried on using the steroid creams, because they would solve the problem temporarily. Oblivious that the steroid was in fact the problem and my body was in topical steroid addiction (TSA).
I didn’t know about TSW at this point so I was back and forth from the doctors and derm being prescribed more and stronger steroid creams, until after endless long nights researching I stumbled upon articles on the topic, MY HEART DROPPED. Every, single, thing added up.. it was as if i wrote these articles. My symptoms were finally in front of me in black and white, I was so relieved. The feeling was bittersweet though, because I was glad to have finally found the answer but it was the worst possible outcome.
The steroids had stopped alleviating me by this point, and I was getting desperate. I needed to do something. It was inevitable that I had to stop using steroids completely, so I decided to do so cold turkey. It was not an easy decision, but I knew that it was the right one. Little did I know, the withdrawal process would be far more intense and overwhelming than I ever could have imagined.
I also knew that in order to have the best chance of recovery, I would need to make some other lifestyle changes as well. I stopped consuming certain foods and substances that could potentially worsen my symptoms; alcohol, caffeine, dairy, gluten, and cut down sugar, as these are all known to aggravate ‘eczema’ in the first place. I also went vegan for a while.
One of the most difficult parts of my journey was putting myself on these strict diets. There were times when I was having panic attacks in the supermarket from over reading labels and not knowing what to put into my body – and if it would aid or even worsen the withdrawal. I found myself eating chicken, rice, and vegetables every night for months on end, but even then I was not sure if what I was eating was helping or harming me.
The withdrawal symptoms were intense, and I quickly realized that I needed to do everything in my power to aid my body in the healing process. I began taking cocktails of vitamins and herbs in an effort to heal my body. I also tried various diets and meal plans, in the end, I found that intermittent fasting was the simplest route for me. It helped to reduce the number of times I needed to think about what to eat, and it made it easier for me to stick to a healthy diet. Along with a lot of exercise, workouts and meditation.
I would dread night time and the constant fear of causing damage to my skin overnight. I was down right scared to sleep, not knowing the horrors I would wake up to. Even when I did sleep, I would only get around two hours of sleep per night and would sweat profusely in my sleep. Some days I would wake up with my eyes stuck together and my body being stuck to my sheets and having to physically rip myself off of them. I had to hoover my bed every single day without fail and the lack of sleep made it all that more harder for me to function during the day and made the withdrawal symptoms even more challenging to deal with.
As the weeks and months went by, my symptoms only seemed to get worse. I experienced allergic reactions to everything I ate down to even brushing my own teeth. I queried this with my gp and had numerous allergy tests including skin prick and IgE, all of which gave crazy unprecedented results because of what my body was going through (Which i now no longer seem to be allergic to btw). I got so desperate i even gave phototherapy a go, dragging myself 3 times a week to the hospital to stand in a machine for 60 seconds plus was no easy task, but i persevered for a few months before inevitably giving it up.
I was unable to wear clothes because of the severe open wounds and weeping. I couldn’t regulate my body temperature, always feeling cold. I weirdly lost all of the hair in my armpits and thighs, and partially my eyebrows. My skin became paper-thin as I could never escape the bone-deep itch, it was a constant battle to find relief.
The physical symptoms of TSW were not the only thing that I had to contend with. The emotional and mental toll of this condition was also significant. I felt isolated and alone, as if no one could understand what I was going through as I struggled to cope with the constant itching, burning and weeping. I was also frustrated and discouraged by the lack of understanding and support from medical professionals.
When I brought up TSW to my dermatologist, I was laughed at and dismissed. I found myself chasing down naturopaths and homeopaths, trying to find answers and relief. I felt like I was on my own, and this made my journey even more difficult.
I honestly didn’t know if there was light at the end of the tunnel but I was determined not to give up, however. I was going to keep fighting until if and when I fully recovered. I researched as much as I could about TSW and tried different remedies to alleviate my symptoms. It was essential to be patient with my body and give it the time it needed to heal.
I ended up going down the No moisture route (NMT). Which is a treatment method introduced by Dr. Kenji Sato from Japan which many people believe speeds up the healing process. It includes stopping any type of moisturizes or creams, reducing your water intake to only 1-2L a day, limiting baths/showers to only once or twice a week and for only about two minutes (I would bathe in dead sea salt and tea tree oil), wearing light fitting clothing, eating plenty of healthy protein, and making sure to get sleep in especially between 10pm-2am.
The moisturizers were the hardest for me, all my life I have scratched and then applied something. So just leaving open wounds was very very difficult but I persevered. Although I wasn’t as strict with this regime as Dr. Kenji is with his patients, I did find this to help me massively.
I leaned on my fiancée, family and work colleague for support, I wouldn’t have been able to do this without them. One of the things that helped me the most was connecting with others who were going through the same thing. I found a community of people who understood what I was going through and who were able to offer me support and encouragement. This helped me to feel less confused and to know that I was not actually alone in this journey.
It has now been 1 year since stopping steroid creams and a long and difficult ordeal, but I am proud of myself for staying strong and not giving up. I am not 100% healed but I now know that there is light at the end of the tunnel and I am determined to keep fighting. I hope that by sharing my story, I can help others who may be going through TSW to know that they are not alone and that there is hope.
Now this was just MY experience of TSW, everybody’s journey is different and there are a lot of us out there! I tried my best to articulate everything that’s happened over the past year, and there is a lot I couldn’t include. I hope I’ve given some understanding as to what this debilitating process entails.
If I had to say a few things I have learnt it would be that TIME IS THE GREATEST HEALER and YOUR BODY IS A LOT MORE POWERFUL THAN YOU THINK.
Thank you for taking the time to read this.
Itch N Bitch 