History of my troubled skin - First Post

Hi, I'm Tommy.
I'm female, a video editor and currently living in the UK with my lovely husband.

For my first post, I would like to share the history of my skin.
All progress pictures can be found here.
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Childhood

Minor eczema on my arm and leg joints and ears. I didn't use any medication and it naturally went away when I was 11 years old.

2006 (22 years old)

It all started like an explosion. One morning, my face and neck flared up terribly. My eyes were swollen up and couldn't open. I didn't know what it was, so went to see a doctor and took a blood test. Nothing came back too abnormal - just a minor allergy on grass and dust. After visiting several other doctors, I finally discovered that it was adult eczema. I was prescribed with a collection of TS and moisturisers. However, none of them worked for me. I tried different doctors, without success. Few months passed. My eczema gradually expanded from my face and neck to my head, ears and arms.

A friend of mine recommended a dermatologist in Tokyo. He was very popular, and prescribed me Protopic for my face and neck. He told me that Protopic doesn't have any side effects and was absolutely safe. After 3 days of using it, my entire eczema disappeared. It was a miracle.

In August, I moved to the UK. Whenever I felt the beginning of another flareup, I used Protopic and it always cleared my eczema.

2007 (23 years old) 

In July, I was in Japan for holiday. Something strange was happening in my body. I had a sore in one of my fingers that was bleeding for weeks. This developed to my nipples and eventually to my face. I had a long-lasting fever. I saw a doctor, but he didn't know what it was.
In August, I went to the USA for an internship. I saw a doctor in California and he diagnosed the herpes infection for my first time. I took antibacterial tablets and the sores went away after 7 days. Later, I discovered that this was the common side effects of Protopic.

2008 (24 years old) 

Back in the UK. I googled how to 'cure' my eczema. I was fed up with having to deal with my eczema for so long.  Soon, I realised that there was no cure for it - or at least that was the common view of most dermatologists. On the other hand, I found some Japanese blogs and websites by people who 'cured' eczema by not using any TS or PT. Their story completely changed my views on eczema. I stopped using any medical cream and started a vegetarian diet. The withdrawal effects came in gradually yet quickly. My eczema, or later I found it was called Red Skin Syndrome, developed to all over my face, neck, arms and upper back.

In late April, I developed eczema herpeticum on my face and was hospitalised for 2 weeks.  I was injected 800mg of antibiotics everyday in addition to taking Hydroxyzine Hydrocholoride tablet 25mg(anti-itchy tablet) and Cetirizine Hydrocholoride tablet 10mg(anti-allergy tablet). My face was covered with thick moisturiser several times a day.

During this time, I was emotionally very low. But, the good thing was that by the time I was released from the hospital, my eczema herpeticum, altogether with withdrawal symptoms, was completely cleared. I had my healthy skin again. I looked completely normal except for the fact inside of me was a little traumatised from the experience. When I left the hospital, they gave me loads of Aciclovir Tablet 400mg and instructed me to take them twice everyday, which I did for the next 6 months.
In October, I stopped taking Aciclovir tablets. I felt I was taking them for too long. Within a month, the severe withdrawal symptoms kicked in.

This time, it only happened to my face and neck yet the condition was severe. My face swollen up and skin was peeling off endlessly. My mum cried and my dad lost his words. I was depressed and embarrassed. Whenever I had to go outside, I wore a hat and sun glasses with high neck jumper to minimise my skin exposure. I even went to a psychic to find the solution to the problem.

When I thought my life couldn't get any worse, I lost my best friend. His funeral was 280 miles away. Also, I had a job interview coming up on the same day. I wanted to skip the interview, but my mum's sad face made me feel bad about not going for it. So I decided to use a weak TS cream (0.05%) just for a week so that I can attend both.

The TS cleared my skin to the level I could go outside and meet people. Even after I quit the TS, my eczema or withdrawal reaction didn't somehow come back. I got my normal skin back.

2009 (25 years old)

Back in the UK, I started my full time job. My skin was fine. I wore make-ups everyday and enjoyed my work and life.

2010 (26 year old)

In June, my eczema was slowly coming back. I didn't use any TS or PT. By the autumn, my skin was pretty nasty. My colleagues noticed my red flaky skin. I became uncomfortable being in the office, felt tired all day that made me psychologically and physically difficult to deal with my everyday life.

2011 (27 year old)

I was diagnosed for "severe clinical depression". I managed to cut my working hours to half.  But, due to the nature of my job it was difficult to keep working this way. I left my job.

I went back to Japan to organise my wedding. During this time, my skin condition started improving. I had minor red patches on my eye lids, but every other part was almost clear. I could even wear make-ups sometimes. Before my wedding, there was still a rough patch under my right eye. So, I used weak TS cream(0.05%) for a week, twice a day. That cleared the last red patch.
My withdrawal reaction came back quickly after the wedding - because of the TS cream I used, or the stress of organising the wedding. Maybe both.

2012 (28 year old)

I was in the endless cycle of skin exfoliation. This time it was on my face, neck, ears and left arm joint. Bleeding. My immune system seemed low as I regularly had cold sores and sometimes sty. My eyes were sticky and uncomfortable. For the first time, I was suffering from insomnia.

2013 (29 year old) - *added on 28/07/2013

My withdrawal symptoms spread further to my right wrist. However, they stopped oozing. Just really flaky and wrinkly. Started using Dr. Fukaya's skin repair lotion in spring, and began to notice some improvements.

And life goes on...
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I remember that back in 2008 I could barely find the websites or blogs on TSW. It was only this week that I noticed there are more people out there going through Steroid withdrawal.  (Yet there are still little information on PW. )

I started this blog to keep record of my skin, and to hopefully meet people going through similar skin conditions.

Comments

  1. I used steroid and protopic too and later found out the effects of protopic s decided to quit using it. I had eyelid eczema in 2010, used steroid for a couple of months on and off. now my eczema is spreading all over my neck, after I stopped using steroid for a month treatment. My mouth area is really dry and flaky. my breasts are also dry and flaky. I have no doubt that I am suffering from RSS. Thanks to your blog, I could get ideas how to battle RSS

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    1. Hi Itchy Mitchy,

      Ah we are so alike. I had eyelid eczema and my neck/mouth/breast areas used to be all badly affected too. Not any more though. You know, every TSW suffer has a different story and perhaps different way of healing too. But because our cases sound so similar, I'm more confident to say that in a long run you'd be glad to withdraw from TS/Protopic and take better control of your health. From my experience, once you start withdraw, your rash would be likely to spread even on parts which you never used any Protopic/ST for. Don't panic, because they will go away in the end. There would be stubborn areas but very slowly they will heal too. I don't know how long you used Protopic for, but be careful for eczema herpeticum. I had to be hospitalised for 10 days during my first withdrawal because of this - although it healed fairly quickly with antibiotics. Whatever you do, don't push yourself too hard. I'll be here for you when you need some support.

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  2. Aww thanks Tommy! Yes i thought of that too our eczema were some kind of the same. I Went to the derm today and sad to say because the rashes on My breast she advised me to use elidel and protopic for My Arm eczema I know by doing this will only Delay My Healing process. I'm such a coward and still on denial Stage. I also mentioned to My derm about TSW and Said that my eczema is Not related to TSW. Weird right? Guess she doesn't know the Real side effects of TS. *sigh

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    1. I think it's only natural to feel difficult to accept such conditions like ours. Even after all those years I still find it hard to really accept mine. It's very tough and depressing. Luckily time is healing my body.

      Most derms don't know about TSW, often never heard of it. I'm sure your derm is a nice person and just trying to do what he/she thinks the best for you. But the thing is that they simply believe that giving you TS is all they can do. I went to a lot of different derms as I thought there's got to be one quick miracle solution for skin like ours, but nothing worked for me. It's sad, but by that time I was completely fed up with my skin and started to think like 'if my skin could get better I would do anything' - which was TS/Protopic withdrawal.
      Having said that, I'm not exactly anti-TS because majority of eczema patients seem to be fine with it without any side effects. But about 10% of people aren't like that, and 10% isn't a small number for such a common skin problem.

      If TS treatment hasn't been going well for you for a long time, why don't you try withdrawal? You can start by reducing the amount of TS instead of quitting all at once if that makes you feel more comfortable to begin with. Besides TS is always available to you if you do wish to go back to it in the future. Start when you feel ready and determined. No hurry. I think there are a lot of info online about TSW these days, guess you joined ITSAN too? Withdrawal is going to be tough - I'm not gonna lie to you - but somehow it works!

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  3. The First time I used TS was in 2010 october. It didn't Last that Long though. I think approx 3 months. Then derm gave me protopic and After that elidel, that was from 2011-13 on and off. And back to protopic Not until May 2013 that My derm prescribed me ecural TS for My oozing thumb. those were the only time that i used steroids. Moving here in Germany made My skin worst. Probably we have a better Sun in Asia.

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    1. Ah you haven't used it so long then! A friend of mine also used TS for not long time, and she wend through withdrawal for about 6 month and eczema never came back.
      Are you also from Asia...? Interestingly when I'm in Japan I heal quicker - my withdrawal is usually done in 3 months. But in the UK it takes awful long time...

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  4. Yes i was Born in the Philippines. Moved here in 2009. Last Year I came back for a vacation and had a Minor eyelid flare up Went to the derm in PH. Gave me clobetasole another TS yikes! After that i was Fine..Went to the Beach no allergies. My Aunt Lives in Tabata, Tokyo though. I could ask her if she could send me those hyaluronic creams for wrinkles together with My Green tea Kit kats. I'm such a cheater sometimes I eat chocolates but in Moderation.

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    1. Green tea kit-kats! Tabata! Ah the sounds of them make me feel nostalgic... One of my best friends is living in Sebu, Philippines. It's strange how our body reacts differently in Europe. I've been thinking a lot about it. My derm told me that many Asians in the UK get weird rashes because of pollens or whatever in the air which is foreign to our body system. I don't know if that's true, but interesting.

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  5. Too Bad that we're One of those Asians who got affected and became super sensitive

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  6. Is it a good sign to get many flaky skin , does that mean we are healing ? Is it ok to peel the dead skin off?

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    1. Hi Viðar, flaky skin seems to be a part of the withdrawal process. So it is definitely one step forward although it is an annoying period. I know some tsw docs say not to peel off the flakes, but I personally find it difficult not to. I hope this answers to your questions :)

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  7. I apply topical steriod for 12 yrs. Tsw for 4 months n im feeling extreme cold, itchy n burning sensation. Nw im in hospital for 3 days. Doc gave me oral steriod, antihistamine and antibodics. Apply lots of moisturizer. When ur in hospital for 2 weeks, doc din giv u steriod or topical steriod ? Nw doc advise me to apply steriod or protopic to speed up the recovery. Say no side effect of steriod. Is protopic worse than steriod ? I read dr fukaya blog. Decided to try out reducing oral steriod slowly but no topical steriod. Mine is whole body frm head to toe.

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    1. Hello Clifford, thanks for your comment. Sorry to hear that you're in hospital. When I had to stay in hospital, it was for eczema herpeticum. And my doc didn't - and any doc won't normally - prescribe topical steroids for eczema herpeticum because it's proven to get it worse. I personally feel that Protopic did a lot worse to me than topical steroids, because it messed up my immune system. I've been getting cold sores so many times through the year and having a weak immune system since I started using Protopic. Dr. Fukaya seems more positive about Protopic, but Dr. Sato says using Protopic makes the withdrawal longer and more complicated, so there is split views on Protopic. I hope your doc will respect your choice of treatment. Which country are you from?

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  8. hi Tommy, after reading your story above, it resonates with mine! Since I was about 20, on and off, over 15 years , on and off with eczema! But the big difference is... i still hadn't the guts to actually go through the hardcore WTS.

    I stopped for about a month, 1% hydrocortisone on my face -- i thought I was OK coz I didnt' have to use every day. just occasionally. Then I my face got those raised patches. I let it ooze and flake as people on ITSAN had said. I was fearless at first, but a week later (probably I shdn't have used apple cider vinegar) then I got so inflamed that it got very thick crusted with yellow non-clear fluids and I felt sick... now I'm on anti-biotics and a cream the derm said was not steroid but it still is...Fucidin-H.

    And it is not the right time to do it coz I'm going to Japan 3 weeks later to take a language course, haha.(I'll definitely try Dr Fukaya's formulas...)

    I think I'll start the WTS when I return home to Hong Kong. Just the idea of having to use steroid again makes me panic. And the problem is here, I don't know any derm who believes in WTS and if I got worse and need medical support they'll still give me steroid. that makes me panic.

    I'd like to ask one thing: I'm prone to being nervous and often clench my teeth and scratch myself for no reason. I'm wondering if this condition is the cause of prolonged eczema in the first place.

    Once again, thank you for this wonderful blog.

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    1. Hi Dead Cat, nice to hear from you again :) So, are you going to Japan in 3 weeks? I'm going back to Japan from England next week too! How long are you staying in Japan for?

      In my opinion, feeling nervous and scratching for no reasons are quite common signs of your mental stress. I wouldn't think it's directly caused by prolonged eczema itself, but the reason is more likely to be psychological. Having said that, I've read somewhere that steroids may influence on your brain, so feeling down during TSW could perhaps be related to steroids (however I wouldn't worry about this because it'll go away when your skin gets better).

      I quite understand your dilemma. While you're in Japan, you can try to see some TSW docs there to see what they say. (I'm, myself, actually planning to see a TSW doc for my first time.) I don't know if you can get a Japanese medical card during your stay, but if you can I'd recommend that.

      xxx

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    2. Hi Tommy, thank you so much for your reply!

      Well I'm going to Kyoto to take Japanese lessons (and travel travel travel), for a little less than 3 months. As I am staying as a tourist, I won't be entitled to any medical welfare, and a traveling insurance probably won't cover that; yes but I'm curious if by any chance I can get more info and even see a TSW doc when I'm there ...(but my Japanese being so poor probably I won't understand what the doc would say)

      I don't know of any TSW doc in Hong Kong (my derm is still giving steroids...), what a shame! (though the good news is we have easy access to Chinese herbal medicine)

      Dr Fukaya's lotion has just arrived at my door! so excited to try!

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    3. Ah Kyoto! That's lovely :)

      There is a TSW conference in Osaka on 21st March if you are around and interested. Hope you find the lotion helpful.

      x

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