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…

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6 thoughts on “My Story So Far – 30 months later – July 2012 Update – Part 1

  1. Hi William,

    I am going through something similar and came across your post. First time hearing about the Red Skin Syndrome, which I think I can related and suspect having (only on the face). I am going through a TCM treatment as well and have a worse condition, of which, to this day I still trust is the right path.

    Recently came across the Lucas Papaw ointment through another friend, and saw it through your site as well, so immediately got some and applied it last night. The redness on my face immediately improved overnight, so hoping that this is the holy grail ointment I need.

    You wrote this post about 4 years ago, and was curious to know how your condition is? Would you mind sharing?

    Thanks a lot for writing this blog to show some guidance to the eczema sufferer community.

    Best regards,
    Jason

    • Hi Jason, I can have a normal life now. The recurring flare outs have subsided. I still get some redness in my face and neck from time to time if I continuously eat bad or sleep late but it is much much batter than before. Each flare out will get less vicious post TSW.

  2. Wow i hope you are all healed now. I totally can relate to that I went through what you were going through. I went on a product similar to yours and I was just completely bed-ridden for months! I felt like I was a cancer patient in bed waiting for death! I took the psoriasis product on this site http://www.de-psoriasis.com as I thought I had psoriasis then but I think it was just eczema. Well anyway, I’m in month-7 in topical steroid withdrawal and things are finally improving. I am also taking TCM and I think that has helped a lot. Thanks for sharing your story. I hope you are 100% healed now xxx ahfaye

    • Dear Ah Faye…I have healed after 1 year of treatment with doctor Mak…I was bedridden for 3 months at one point so I can understand your experience… good luck with your healing and wish you positive outlook and health … keep the faith… you will get better… William

  3. That’s a lot that you went through and now you are on the other side! I am 4 months in and I swear if I miss one dose of cyclosporine, I can totally tell.

    • Hi mel, keep the faith. It is hard going through the detox process and getting the body to not rely on suppressants (steroids and the like). It took me 2 years (one of which I couldn’t work because it was so disabling)

      William

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