Why it finally clicked

During the "flare" what remained constant was the constant itch. On hindsight, the itch was largely similar to how Eczema itch is, but much more intense. Some describe this as a bone deep kinda itch - but for me it was just a really intense itch that was hard to resist not scratching. Looking back, this probably was the only one symptom that was really made things a little confusing.

Basically, if you were told your entire life you were itching because of Eczema, it would be acceptable for you to think that any other skin related symptoms, no matter how aggrevated were Eczema at work too.

What helped me realise what I was facing was more than Eczema, was that the following symptoms I was experiencing were really not the normal kind I got for the last 30 years:

1. Non-stop flaking, even in areas where I had no Eczema previously. This was what was described as severe dryness from my dermatologists - apply more moisturizer they say..
2. Persistant oozing on areas that flaked. My clothes would get stuck to the ooze, and the ooze would never really stop. The ooze was probably the main thing that made this whole ordeal feel disgusting..
3. Chills so bad that I would shiver even under Singapore's hot weather - I was not having a fever too. I remember hiding under my blanket trying to get warm on a hot afternoon but I just gradually drifted to sleep while shivering.
4. Sweating was largely decreased - even in the most humid conditions, I was not sweating! Given that I'm a sweaty guy, this was a shocker.

1 & 2 probably seemed like symptoms that could be common to Eczema. But personally they were largely different from the Eczema I knew.

3 & 4 was what clearly indicated that I was handling a different monster all together. My skin seemed to be unable to perform its basic functions like thermal regulation and sweat production.

It was so frustrating dealing with the symptoms because my doctors were just suggesting more steroids, and biologics (which they said would not be a cure too). This part probably deserves its own blog post :')

These symptoms made my life unbearable, eventually I visted Skin Health Center - a place a fellow friend recommended me visit.

When the steroids stopped working

By late January 2023, I was squeezing out tubes of Fucicort like they were toothpaste during a sale – one tube barely lasted me a week, and they were losing their effect faster than before. It was also in January that I was advised to go on dupixent/rinvoq by my dermatologist (More details in my previous post..). The decision to not go with biologics was not a easy one. It was something that was technically within my financial means (though it meant burning a perpetual hole in my bank account), and honestly I was really desperate for a better solution. Note how I'm not even seeking a cure here because I already kinda accepted that there was not going to be one.

TCM attempt

After deciding not to start my bioslogics treatment. I looked for other forms of 'alternative' treatments.

The first one was a Traditional Chinese Medicine kinda approach, introduced to me by another friend suffering from the same kind of Steroid Withdrawal symptoms. On the 1st of February, I recall making an appointment for Tangs TCM, and I was advised to immediately stopped using my steroid creams before my visit.

It was the 4th of February when I visited Tangs TCM at Bugis (3 days after going cold turkey). At that time, the redness and peeling has already started on my face, and I remember feeling really chilly while waiting for my turn to talk to the physician - more on that later. During the consultation, the physician shared that recovery would likely take me something between 1-5 years, as I had already been using steroids for such a long period of time. There was not really anything he could do for me really! All I got after that session was a few tube of medicated moisturizers that gave off some kind of cooling effect (I assume its to ease off any kind of itch).

How everything spiralled in a week

The next few nights were like a scene from a horror movie. Every night I would be shivering in bed until I feel asleep, with my skin starting to throw a party of complete ooziness, flakiness and redness. Basically everywhere la! By the 7th of February I was averaging 1-2 hours of sleep a night, and every morning turned into a routine of just waking up and staring into blank space. Vacuuming my skin flakes every 10-15 minutes also became the norm.

It was almost impossible for me to function normally at this point. Sleeping was near impossible, walking around turned into short shuffles/waddling because the oozing was so bad in my inner thighs. To be honest, I was not able to deliver much work during that 1 to 2 weeks. Looking back at the journal I made during that time, I only bothered writing down all the factual stuff that happened, I probably did not want to document the emotional trauma that both me and my wife was going through.

It was during this time that having a great support system helped me. Firstly, Felicia was always by my side encouraging me and showering me with love. She was also and helping with the piling amount of chores at home. My boss was kind enough to let me work from home indefinitely when he knew of my condition. (Tbh, I was on the verge of just resigning in Feb..)

This whole ordeal continued on for 2 weeks before my first visit at Skin Health Center.

Hey there! This is my story and experience with this nasty thing called Topical Steroid Withdrawal.

My Eczema Story

Before going into detail of my TSW journey so far, I think its important to recognise that I have been experiencing Eczema or Atopic Dermatitis for the majority of my life. Eczema is nothing new to people, about 20% of children and 11% of adults in Singapore have some form of Eczema.

The photo below kinda is one of the earliest photos I can find with my skin being inflamed and red (Look behind the folds of my arms). Eczema really was something I got used to very early on in my life. It was really common to hear things like "eeyer you chicken pox boy." in primary school. But it was something I really got used to. Surprisingly, eczema really never stopped me from pursuing various sports and activities in school, and this perhaps because my eczema was never really the severe kind. At its worse, the BSA (Body Surface Area) was maybe 20%. Tbh, only bad memories I had those humid Singapore nights as a kid, and requiring my Mum to scratch me to sleep :')

In secondary school and in JC, I would take part in sports activities quite often, be it Basketball or even Dragonboat in JC (that was my CCA in JC lol). My skin condition never really stopped me from taking part in those things. Looking back, I think it was all only possible because of my usage of topical steroids. In those earlier years, all I really had were creams from a neighbourhood GP, and these creams kept everything at bay.

Somehow I was never really very diligent with my steroid cream usage. That meant that I would always apply the creams till the inflammation subsided, and till I was no longer that bothered with the eczema. The underlying eczema was always there and I never really outgrew it.

This really carried on into my 2 years of National service and all the way into my working years. Somehow I always was able to rely on the creams the GP gave and it never really posed an issue for me.

My steroid cycle

In 2020, something within me seemed to shift significantly. Perhaps it was the mounting stress, my transition to a new job, or the change in environment, but it led to one of the most severe eczema flares I've ever experienced. Strangely, this was also the period when I took up running quite fervently. However, even as I tried to stay active, I noticed that the creams my GP had always prescribed were losing their effectiveness. Despite multiple visits to the GP, the routine remained the same: apply the creams diligently, twice a day, until my skin returned to normal.

As the GP-prescribed creams continued to fail me, frustration and desperation set in. Having the means and aided by medical claims from my workplace, I decided it was time to consult a dermatologist for the very first time. This decision led me to a pivotal moment – the prescription of Elomet cream. Almost miraculously, the effects were swift and remarkable. Within a mere week, I found relief from the incessant itchiness and flaking skin. I vividly recall sharing my success story with a close friend who also battled eczema. Back then, it genuinely felt like I had finally triumphed over an issue that had haunted me for ages. While my friend warned me to be cautious about steroid usage and moisturizer application, I didn't pay too much heed – everything was working perfectly for me at the time.

Over the course of two years, I made regular visits to the first dermatologist, relying on Elomet each time a flare-up occurred. However, the efficacy of the steroid diminished progressively, and the affected areas began to expand – encompassing my scalp, face, torso, and more. The pattern was all too familiar. Then, in 2022, I decided to seek another dermatologist's opinion, driven by the realization that Elomet was no longer my savior. This new dermatologist introduced the concept of rotating steroids, which seemed logical at the time. With renewed hope, I embarked on a treatment plan involving Fucicort and Supricort creams.

As the months rolled on into 2022, I couldn't ignore the waning effects of these creams. By August of that year, my professional life took an unexpected turn as a significant layoff hit my team. This prompted me to address my skin condition before diving into my next job. During a dermatologist visit, oral steroids (prednisolone) were prescribed, and they worked wonders, granting me a clear respite within a week. Yet, as anticipated, the relief was short-lived. By December, during my second round of oral steroids, their potency had already significantly diminished. It was during this period that I found myself on my honeymoon in Hokkaido, struggling to manage my condition while savoring the trip. Reality hit hard after my return. My dermatologist confirmed that my eczema was escalating aggressively, compounded by excessively dry skin and relentless peeling. Even the steroid creams had lost their effectiveness. The unsettling truth was presented before me – the option of biologics treatment, a decision I found myself on the brink of making.

Biologics

The options laid out to me were the following:

1. Dupixent - ~ 1200 SGD a jab every 2 weeks
2. Rinvoq - ~ 75 SGD a pill every day

Holy crap! Financially this did not make sense to me. I decided to try alternative treatments at this point, such as TCM, and the first advice I got was to stop all forms of immunosuppresants and steroids. Stopping did all sorts of nasty things to my skin, basically every part of my skin except my palms and feet were peeling and flaking. My skin also started to ooze at this point. Even my family could tell I was suffering tremendously. My inner thighs weeped and oozed so bad, I really could not walk and keep up with them. All day and night I was feeling chilly, even during the hottest of summer afternoons.

It was only at this point did I realise.. What I was experiencing was probably not eczema or atopic dermatitis...