My Story So Far – 30 months later – July 2012 Update – Part 1

It has been over 12 months since I started this blog and over 30 months since I’ve stopped using steroids to treat my eczema and to seek alternative methods of healing. Today, I am still on a journey seeking for a full recovery from all the skin ailments that have engulfed me beyond imagination over the last 3 to 4 years. As I speak, I am still not fully healed but I believe I am alot better than what I was 30 months ago. In this post, I am going to share with readers a summary of my journey over the last 30 months including photos of my flare outs & recovery at different points in time. I hope, through this post, I am able to convey the dangers on prolonged usage of steroids to treat eczema and also a sense of hope to eczema sufferers illustrating that the worst of eczema conditions can heal. If you are new to this blog, you can also check out the following post which gives you some background about myself.

In relation to my skin ailment condition, I have read through many eczema articles and websites as I seek for a life-lasting solution to my condition (see Useful Links for some references). Interestingly, I recently came across a website that reinforces my suspicions that my problem is not atopic dermatitis eczema as commonly diagnosed to most eczema sufferers but steroid-induced eczema (also known as “red skin syndrome”) caused by topical steroid addiction. More details about “red skin syndrome” are available on the International Topical Steroid Addition Network (“ITSAN”) website. For the remainder of this post, I will continue to write in the manner of a “red skin syndrome” sufferer, where upon the stoppage of topical steroid usage, the sufferer would go through cycles of topical steroid withdrawals resulting in widespread skin inflammation & flare outs; the length and frequency of which is correlated to the amount of topical steroids that the sufferer had used and accumulated into their body in the past (in my case over 20 years with the last 10 years being particularly excessive).

Jan – June 2010 – Topical Steroid withdrawal cycle 1

When I first stopped using topical steroids 30 months ago, I recall I experienced the following on a daily basis for the first few months:

  • An intense itching sensation that originated not from the skin but an irritable sensation in the blood flowing through the entire body. This intense itching sensation was always coupled with an intense sensation of heat and it would be most pronounced after a shower / bath (even after a cold shower). I recall I would typically, on a daily basis, spend up to an hour locked up in my air-conditioned bedroom after a shower trying to control the intense itching sensation and moisturize myself but would always succumb to scratching my neck, my chest and my body all over & ending the session red and inflamed. Over time, I accumulated a lot of scratch wounds from the scratch sessions and daily showering became a torture in itself. I continued to be red and inflamed from neck downwards and at times, the skin was so raw it was painful to put on clothes and to undertake any active physical exercise. I continued to work during this time but sometimes I had to hide in the office toilet as the pain / itch completely consumed me.
  • In addition to the intense itching sensation, I would sometimes get pins and needles all over my body. This was most pronounced when I was in a densely populated situation, e.g. in a tightly-packed crowd. The feeling would be so sudden and intense that I had to stop walking and stand still as I found it hard to catch my breath. These unusual sessions would last perhaps 15 minutes and I noticed I also had high blood pressure whenever I had these pins and needles sessions.
  • These first few months were particularly difficult for me as I was on my own with no guidance on what to expect.   I went seeking for an answer going from doctor to doctor & trying out all kinds of alternative remedies.  The western doctors / specialists I went to visit during this time all continued to advise me that eczema was incurable and it was ok to use steroids.  Hence, I didn’t get any help through this route and I pretty much wrote off all western medical advice.  I also went to see a recommended Chinese herbalist doctor who was working in the Chinese medicine faculty of a public hospital.  I persisted with this doctor for 6 months drinking foul tasting Chinese medicine everyday until she went and pursued further studies overseas.  I made little progress with the prescribed herbal medicine by this Chinese doctor.  Her ongoing diagnosis was I had very “heaty” blood but the medicine didn’t do any magic in terms of addressing my heatiness and itchiness.  I also tried juicing and detoxing during this period.  The juicing experience did seem to help relieve the intense heat sensation somewhat but I also found out later (from my present Chinese doctor) that the juicing experience had also considerably weakened my health because taking a daily cool glass of juice of cucumber, carrot, granny apple, green pepper & bitter gourd was too cooling for the internal system weakening the spleen over time.  The symptoms of sudden shivers and feeling cold that I now have (as advised by my present Chinese doctor) is a consequence of taking too much cold drinks in an attempt to cool myself, particularly taking cold drinks in the morning including the daily raw juice routine that I tried for 2 months.  Hence, I would caution users with care when trying out raw vegetable juicing.  Perhaps, it should be a weekly routine rather than a daily routine.
  • In terms of alternative remedies, I have also tried a HK off-the-counter chinese medicine product called “Eczema Clear” (濕疹清) and I also went to visit the doctor who produced the product.  In summary, I would not recommend this product because the healing process is too painful though I would imagine it might have done the trick if I persisted.  I tried the treatment for about 8 weeks entailing daily cleansing of the mixed “Eczema Clear” solution in hot water (as hot as possible) but stopped due to the increasingly disabling pain I experienced.  My experience  on using the cleansing solution was it would clear up any immediate redness and inflammation in the first week with a skin depeeling process making the skin smooth-looking.  However, on continued use to continue the detox process, redness and inflammation would reappear (including in places where you never had eczema) and the theory is this skin inflammation and depeeling process would continue until all the toxicity were removed from the body.  By the 4th week of treatment, I had redness & inflammation appearing in every part of my body except for my face.  I recall it completely freaked out my family who had never seen me look so much like a red indian and I was wondering if I was really making any progress myself.  The catch to this remedy that tore me apart & led me to stopping the treatment was that after each daily cleanse, the drying off of the solution would also dry off all the moisture from the skin.  You could actually feel the sensation of moisture being pulled out of your skin and this sensation intensified in the later parts of the treatment where the skin felt so tight, it was painful to move and no moisturizers would give you any relieve.   I recall that, by the 8th week, a cleansing shower would take me over 2 hours because it was so painful and that my skin would be so tight afterwards, I would often shrivel into a wreck of pain and misery in bed after every shower.

To be continued…

My story so far

I am an overseas born chinese guy, married with a toddler child, currently in my late 30’s and work in a bank.

I have been a lifetime sufferer of eczema starting with hayfever allergies during my early teenage years in the UK. During those summer periods, I would also sometimes get bouts of mild eczema on the fold of my arms, legs and on my neck due to heat rash. It was uncomfortable but largely non-intrusive and life was largely normal in those days with doctor’s prescription of antihistamines, creams and sometimes mild steroid cream.

I settled in Hong Kong in the late 1990’s looking for better career opportunities and adapting to the metropolitan lifestyle of Hong Kong, my eczema condition started to slowly take on a whole new lease of life since my move to Hong Kong. Over the years, my bouts of eczema flare outs had gotten more aggressive and frequent over time with more intensive itching sensations spreading the condition initially to the legs, then body, back and eventually everywhere including the face. Over the same period, I would goto see different western skin specialist doctors to address the issue and they would prescribe stronger and stronger dosage of anti-histamines and steroid cream. After every prescription dosage, the eczema flare out would reside returning firstly after a year, then shortening to 9 months, and then with stronger steroid cream shortening to 6 months, and then progressively to 3 months and eventually more recently to 1 month even after taking steroid pills as a medication.

Over the same period, my general well being had deteriorated with lower energy levels and a less active lifestyle due to the eczema condition. At it’s worst, I couldn’t sleep from the itch and inner heat, I couldn’t concentrate to work, I couldn’t walk without pain and dreaded having showers everyday with the burning pain that came with cleaning the thousands of wound cuts all over my body. Social life became an embarrassment and my self esteem was very low. It got to a low point where I basically concluded western medication isn’t going to work and I had to take charge of my own health or face a prolonged slow death from the torture that I was experiencing. I started to seriously research and read up on eczema treatment.

Interestingly, it became apparent to me and I am also convinced by it from personal experience that steroid creams not only doesn’t really help with eczema but it deteriorates your health to make eczema more problematic over the long term. Hence, over the last six months, I have completely stopped using steroid cream and have been trying alternative remedies. In this blog, I hope to share some useful experiences to readers and I truly wish strength and inner peace to other acute eczema sufferers who are reading this blog. I understand that eczema can feel like a life-long torture but it can be managed out!