Mini’s Story – Three Years Topical Steroid Withdrawal
How did your health condition begin?
I was diagnosed with eczema at six months old and was prescribed topical steroids to manage my rashes and dry skin. As a child, I always struggled with my skin and was told by doctors to use the steroid creams more and more frequently as the flares kept coming back. Every time I went to see the doctor, they would say I would eventually grow out of it. I never did.
Every year, I was prescribed higher potency steroids and told to use them more frequently. In 2015, I started to worry about my dependency on steroids and was desperate to look for natural ways to “cure” eczema, which was when I first came across TSW on the internet. Reading up on the symptoms I was sure that I had TSW. I asked my doctor and a private dermatologist about TSW and both told me that it doesn’t exist. At the time, I didn’t have access to the online TSW community we have now and was so conflicted even though I knew something wasn’t right with the steroids. It was especially hard to know if I definitely had TSW as I couldn’t find any pictures of people with brown skin tones who were going through TSW. I asked myself, “If the doctors are saying it is safe to continue using steroids, should I be questioning them and listening to strangers on the internet with no hard evidence?”
By 2018, my whole body and face were red and felt like they were on fire. I was using the steroids everyday as prescribed, but they weren’t working anymore. A colleague at work then told me about the “Aron Regimen” which is where Dr. Aron, a dermatologist in London, was prescribing a combination of topical steroids, topical antibiotics, and a moisturizer with amazing results for patients with eczema. I was skeptical about this approach as I was already using potent steroids and had been on numerous rounds of antibiotics with little to no relief. After researching online, I could see so many patients raving about the treatment and how it cleared up their eczema in no time. The problem I was facing is that there were no reviews available from patients who had been following this regime long-term. I was sure I had some form of steroid addiction and was unsure whether to go down the TSW route or the Aron Regimen route. I once again went to my doctor to ask about TSW and was told again that it doesn’t exist and I should continue using steroids (even though it was clear they were no longer working). I felt totally alone. I was so scared to stop using steroids as it was all I knew about managing eczema. I was scared that if the doctors were right and TSW doesn’t exist I would just be making the issue worse and would not be able to manage even getting through the day with the severity of the pain and discomfort I was feeling. I decided to try the Aron Regimen – at this point I thought, “What do I have to lose?”
I came home with my new prescription of a mix of topical steroids, antibiotics, and moisturizer. My whole body was covered in red burning rashes, so I put the cream all over my face and body. The next day the redness had calmed down by at least 70% and I finally felt some relief. Within a week the whole-body rash had subsided and I was only using the cream on problem areas (my face, neck, elbow creases and back of knees). This allowed me to get my life back and I was just so happy to have some relief from the pain and discomfort. A little voice in my head kept telling me that this would not work forever and eventually, as had happened all through my life, this would stop working, too. But for now, I just wanted to live, so I quieted that voice.
As predicted, by the end of 2019, the cream had stopped working and I was back at that same place where my skin felt on fire. I went back to my doctor and was prescribed oral steroids to help get the “eczema flare” under control. Once I tapered off the oral steroids, I started flaring again. I saw a private dermatologist in January 2020 who told me I would need to learn to live with my symptoms and use steroids to manage. I once again asked about TSW and the doctor told me that it is not real and made up by steroid phobic communities. I asked if there was anything else I could do to help support my skin naturally and all he said was to try to keep stress levels low and keep away from contact triggers. He also suggested immunosuppressant drugs and said I could give Methotrexate a try. I absolutely didn’t want to start taking immunosuppressant drugs as I was so traumatized by using drugs and was worried it would be another short term fix. I left my appointment feeling like I was completely alone with no real support from the medical community.
After my appointment, until the beginning of May 2020, my skin was completely out of control. I was prescribed oral steroids for a longer period to help get my skin under control. Every time I would start tapering off my skin would start flaring again and I could see that topical steroids alone were no longer going to work.
When and why did you stop using steroids?
In May 2020, I decided it was finally time to stop using steroids. It was clear that topical steroids were no longer effective and hadn’t been for a very long time. TSW was something I had in the back of my mind since 2015 and it was absolutely clear to me that I was fully addicted to steroids at this point. I didn’t want to rely on drugs anymore and decided to take my power back. It seemed like the perfect time to start TSW as the world had just gone into lockdown and I felt I could actually do it. I was supposed to be getting married in September 2020 which was the only thing stopping me from starting TSW. When it was clear that we would need to postpone the wedding to 2021 because of COVID, I finally took the leap to start TSW on 16th May 2020.
What steroid medications did you use?
Hydrocortisone, Eumovate, Elidel, Metamethasone, Betamethasone Dipropionate, Prednisolone
How long did you use topical steroids for?
How are you doing today?
I am now 3 years and 5 months into TSW and I am doing a lot better. My skin now feels more comfortable than it did when I used to use steroids and I am no longer dependent on creams for moisture. I’m still super sensitive and must be very careful around my known triggers, especially artificial fragrance. As my symptoms are no longer suppressed by steroids, I flare if I encounter my triggers, which can be quite difficult. I have a long way to go with my healing but have made such amazing progress in the last 3.5 years. I know I made the right decision to stop using steroids. I’m now studying naturopathic medicine to understand the root causes of disease, including my original skin condition (eczema) and how to support myself and others using a natural and holistic approach combining diet and lifestyle.
What has helped you?
- Moisture withdrawal
- Not using tap water on my face
- CAP treatment
- Dead sea salt baths
- Removing all artificial fragrance from my home
- Walks in nature
- Eating whole foods and limiting processed food
- Going to Indonesia – the water, air and weather completely transforms my skin!
- Connecting with others in the community
- Support from my husband, family and friends
- Not drinking alcohol
What hasn’t helped you?
- Trying to figure out an “end date” to my healing
- Not setting clear boundaries with work, friends and family
- Coconut oil
- Restrictive diets
If you would like to know more about my healing journey you can follow me on Instagram at @mini_naturopathy_and_tsw.