My Story

This page offers some background on me and my usage history to provide context on my topical steroid withdrawal (TSW) journey.

It’s a little detailed so I’ll give a brief summary upfront: First used topical steroids as a child (around 6-8 years old) but only to treat once-off eczema rashes; first major eczema flare ups as a teenager (13-16) and used over-the-counter topical steroid creams together with oral traditional Chinese medicine (TCM); began using prescription strength topical steroids in mid-20s after seeing dermatologist; became a regular user (at least once a week but not always potent steroids) about 7 or 8 years ago; became a very regular user (sometimes daily) but not always potent steroids) about 3 or 4 years ago; never injected steroids but took oral steroids for a total of about 3 months, on and off, in 2016 in the 6 months leading up to start of TSW.

I was born in Taiwan and immigrated with my family to Australia at the age of 6. I was never breastfed, but as far as I know, I did not suffer from any immune-related issues up until that point in my life.

I recall first putting steroids into my system less than a year after moving to Australia. I developed a small rash the size of the coin on my upper back, and when my mother took me to the doctor, I was prescribed with a steroid cream that made the rash go away after just a few applications. It was so short-lived that I’m amazed that I still remember it. Now, it is possible that the rash developed because I also briefly (a few months at most) used an asthma puffer that potentially contained steroids around that time, though I cannot be sure if the asthma or the rash came first. In other words, it is possible that the steroids in the asthma puffer caused that very first eczema rash.

The eczema did not return immediately after that first encounter, and from memory it rarely returned at all. I must not have had many skin issues growing up because I remember swimming in the pool every year and being out and about in just my swimming trunks, which I would have been too self-conscious to do had I had skin problems.

My next eczema memory did not come until I was 15 or 16 years old. I was going through puberty and starting to feel more pressure from school. I recall having a few major eczema flares on my arms, shoulders and also my face, but at the time, the vast majority of my treatments were confined to TCM, which worked exceptionally well. The flare would be contained within 2 or 3 days of taking the TCM, and then the rashes would flake over and new skin would appear underneath. In all, most of my flare ups lasted only a week. It was around this time that I stopped swimming, because I believed the chlorine was causing or exacerbating my flares.

Unwittingly, I had also started using topical steroids from about this time. I never got a prescription from a doctor, but my parents had bought a Chinese over-the-counter cream known in some parts as “999 Cream”, which contains the corticosteroid dexamethasone acetate. They knew nothing about steroids and I used the cream liberally — all over my face and body — for months, possibly years, before friends told them that it was harmful. What made things worse (or possibly better) was that we sometimes accidentally bought the “fake” versions of the cream, which did not have that cooling sensation or work at all, but we have no idea what was in them.

I still had eczema flares every now and then, but for the most part my skin was under control in my early 20s. When I started working as a corporate lawyer in my mid-20s, however, the stress and anxiety ramped up significantly and I began to have more and more major flare ups. TCM still worked relatively well, but I felt like it took too long to work (a week or two felt like a long time back then), so I saw a dermatologist, who told me that eczema is not curable and that it would have to be dealt with for life. I was prescribed with Advantan ointment (which contains methylprednisolone aceponate) and a glycerin-based cream to apply religiously all over my body for a week. It cleared my full body flare extremely well in just a few days.

The eczema would always return, of course, and over the years I have used both Elocon (mometasone) and the immunosuppressant Elidel on my face and body. The good thing about Australia is that most potent steroid creams require a prescription, or else I would have used much more than I did. I also tried a bunch of non-steroidal creams and ointments, but nothing came close to matching the efficacy of steroids.

I definitely became a regular user in my mid-20s, putting small amounts on my skin probably two or three times a week, but not always with the potent prescription steroids. My in-laws had easy access to a less potent steroid cream, but it was a big tube and I used it very liberally. During this time, I still continued with TCM treatment every now and then, and it still worked quite well. There was one particular doctor I saw who kept my skin fairly clear for long stretches, but as I exercised and played basketball a lot, the sweating always ensured that my body was never 100% clear of rashes. In fact, I don’t think my skin has been 100% clear since my teens.

When I was 29, my wife fell pregnant with our first child and we moved back to Taiwan for the birth. The lack of sleep and stress from being a new parent caused my eczema to flare. In particular, my hands started to get eczema for the first time, probably from washing milk bottles every day without gloves. I saw a local dermatologist who echoed the words of his Australian counterpart — no cure, can only contain with lifestyle choices — and prescribed me with the antihistamine Xyzal to have long term plus some steroid creams. I also did an allergy test which showed that I had a strong IgG (cumulative) allergy to wheat and egg yolks, and a moderate allergy to dairy. I cut out those foods for a little while, and together with the Xyzal and a low-stress job, I was in the best condition I had been in for years. It didn’t really matter if I had little pockets of eczema here and there, because I had steroid creams readily available to make them go away quickly. My family members in Australia introduced me to this special cream that this doctor had put together — low doses of steroids in body cream, one for morning and one for night — and it worked wonders. Before I knew it, however, I had become almost a daily user, and my diet had gone out the window. I was exercising a lot so I thought I could eat whatever I wanted. Eggs, wheat, dairy — almost every day.

At around May 2015, at the age of 33, I noticed a change in my skin. I was starting to flake on the side of my head, in the area just above the ears covered by hair, and the flaking just wouldn’t go away. When I had eczema rashes, the less potent steroid creams I was using didn’t work anymore. I started to get really worried when I saw a TCM doctor and the medicine did absolutely nothing. I was still on Xyzal but it didn’t seem to work any longer.

I continued for months on a combination of TCM and steroid creams to keep things under control. The TCM I was taking didn’t really work unless I also took this special powder for my stomach beforehand. The doctor said it was because my gut was unhealthy and the TCM was flowing out of my system, so I needed the stomach powder to seal it in.

In late 2015, I became a freelancer and took on the job of translating for a huge concert team that had been flown over from the UK. It was an incredibly intense, stressful and exhausting couple of weeks, and I felt like my eczema was always on the edge of exploding, but somehow I kept it under control with my TCM protocol. In February 2016, I took on another intense interpretation job, this time for a visiting US TV producer, and it took a lot out of me. Immediately after, I took on a translation gig on live TV for the first time, for the 2016 Oscars ceremony. My stress and exhaustion must have hit an all-time high, because right after the ceremony ended I developed a sore throat and fever. I was put on antibiotics but never a full course (the Taiwanese medicare system only provides 3 days worth each time), so my fever and sore throat kept coming back. By the time I finally recovered, I had pretty much been on antibiotics for a whole month.

With such a damaged gut (which I didn’t realize at the time), I could not keep my eczema under control. I saw half a dozen different doctors, both Eastern and Western, and the only thing that helped, in all honesty, was steroids. This also marked the first time I started taking oral steroids in conjunction with topical steroids (and to a lesser extent, the immunosuppressant Protopic, which I used for less than a month). Things would be under control when I was on the steroids, but I would flare up almost immediately upon stopping usage. I had a wedding to attend in Bali in June and a trip to Japan with my wife in October (without the kids!), so I more or less stuck with the oral and topical steroids throughout this time.

It was around this time that my wife first found out about topical steroid addiction (TSA) and Red Skin Syndrome (RSS). I saw that video from Dr Rapaport (I’ll put it in the resources page) and realized I must have it. There was no other explanation. I thus began planning for the inevitable. I did not want to be on steroids for the rest of my life, especially when it was already starting to fail me. I was working from home and knew this was the perfect opportunity.

And so on November 15, I used topical steroids / oral steroids / immunosuppressants for the very last time.

Advertisements