TSW Event Report from Japan!


How do you get information on TSW? I'm pretty sure for most people it came from the internet. I myself gathered information on TSW solely from the internet for many years, and from some books more recently.
 
But this time, I got a chance to learn about TSW from dermatologists at a lecture event! Atopic, which is a TSW patients' organisation, holds free lecture events by TSW doctors regularly. In fact, the one I attended was their 24th event. It was divided into two parts to meet the audience's needs - the first half for child patients and the second half for adult patients. I only attended the second one, which lasted for 3 hours. It was very practical and full of useful information.

In this post, I would like to report on the event to fellow skin warriors.

The 24th Lecture Presentation on Atopic Dermatitis in Tokyo

First of all, there were 4 working dermatologists as speakers - Dr. Kenji Sato, Dr. Mitsuko Sato, Dr. Shigeki Fujisawa and Dr. Satoko Minaguchi. All of them have been offering the TSW treatment to patients.
On arrival, I was given with a welcome set of documents on TSW, which was surprisingly detailed. 
Each doctor gave a presentation with slides, except Dr. Mitsuko Sato (she gave her presentation in the first part of the event). The message of their presentations was very clear.  That is, the topical corticosteroids addiction is very real and TSW is the method to get rid of it.  Of course, there was data and statistics to back up their voice.

Despite there was a big typhoon hit Tokyo on that day, 237 people attended the event.

How effective are Topical Steroids on Atopic Dermatitis?

Dr. Kenji Sato showed data from a research paper by Dr. Furue, who is the main author of Atopic Dermatitis Treatment Guideline in Japan (this is the official guideline that sets TS first-line in the country). Dr. Sato said that information on the guideline indicate no valid source. He looked up Dr. Furue's past paper to find justification for the standardised TS-based treatment for AD. 

Dr. Furue's investigated how the severity of AD changed by using TS for 6 months (Furue M et al, Br J Dermatol 2003; 148: 128-133).  He tested on 1240 patients, a large number for a medical research.

Dr. Sato simplified the result data as follows.

Among 1240 patients :
- 38% of them saw their atopic dermatitis subsided.
- 59% of them saw no change.
- 3 % of them actually got their atopic dermatitis worse.
- None of their atopic dermatitis cured.

None of their atopic dermatitis cured after 6 months use of TS.  So, to start with, TS isn't something to 'cure' your eczema. Alright, you might have already known that as the medical leaflets say so these days (not in Japan though), although doctors usually don't make it so clear. What I didn't know was that TS don't even relieve your eczema often. I wonder if some of the test participants have developed tolerance on TS so that TS didn't work so well. Anyway, I found this result shocking. 

Dr. Sato's Rate of Healing on TSW 

Dr. Kenji Sato giving his presentation.
When you're going through or thinking of starting TSW, one question always floats on your mind.

"Does this really work?"
 
Do you have the same question? Good news! Dr. Sato presented a rate of healing on TSW at his hospital during his presentation. 
He collected data from 360 patients over the age of 3. 
The indication of 'healing' he set was 'to be able to return to the social, work or school life".

Here is the result.

Among 360 patients :
- 2 people started using topical corticosteroids again.
- 7 people left his hospital. (Dr. Sato explained that some cases were because they didn't get along with other inpatients.)
- The rest of them made it to healing.

To put it simply, 97.5% of his patients recovered enough to have their normal lives back after going through TSW.
I thought that this rate of healing was really encouraging and definitely something everyone was waiting to hear.  But strangely, the result somehow looked too good to me so that I wasn't sure if I could trust the figure. (Sorry for being a doubter, but doubting doctors was something I had to learn from TSW.)  I read a lot of blogs on TSW and my impression on its success rate wasn't that high.  In the end, I decided to trust this data though.  I will explain the reason later.

Moisturiser withdrawal is 'usually essential'

Dr. Kenji Sato explaining on moisturiser withdrawal
Next, there is something I need to mention here. Because this made me realise that I needed to correct one of my old blog posts.  It is about moisturiser withdrawal (if you never heard of it, see my old post here).

I personally have an impression that moisturiser withdrawal is still seen as an unfamiliar idea even among TSW patients.  However, the doctors on the event all agreed that moisturiser withdrawal was 'usually essential' rather than 'encouraged'.  I knew it was a good thing to do, but thought it was optional at the time I wrote the post.  They explained that only about 10% of TSW patients healed without moisturiser withdrawal, and they were all mild case patients.  TSW patients who recover well are usually doing moisturiser withdrawal strictly, according to the doctors.  Even children can be addicted to moisturisers.  Dr. Sato said that wiping off oozing or picking up scabs could be 'moisturisers' to your skin.   

Atopic dermatitis heals naturally

Next, I would like to share how the TSW doctors saw simple atopic dermatitis.  All of them agreed that simple atopic dermatitis needed no specific treatment.  They said that the nature of simple atopic dermatitis was 'healing naturally'.  Dr. Fujisawa expressed this in an interesting way - "Let your brain recognise the error(=atopic dermatitis). It will correct the problem on its own. But if you use topical steroids, your brain cannot see it as a problem! "

ITSAN debut in Japan and other stuff 

The ITSAN video shown during the event.
The lovely ITSAN video and message from Mrs.Kelly Palace were shown during the event.  It was nice to see ITSAN and Atopic teaming up to raise awareness of topical steroid addiction.  The doctors and Atopic members said that they were happy that the problems of TS were more and more recognised around the world.

After the doctors' presentations, two of TSW patients talked about their experiences on withdrawal.  They were both hospitalised at Hannan Chuo Hospital, where Dr. Kenji Sato worked.  They went through horrific experiences just like many of us, but said that being hospitalised and making friends who were also TSW sufferers helped them a lot. 

What really impressed me on the day

I think I should mention how Dr. Sato's rate of healing became convincing to me.  I am not medically educated, so I cannot examine the data from a medical or clinical perspective. 

After the lecture event, I had a chance to attend the post-event party at a pub.  There were 70 people and 90% of them were Dr. Satos' ex-patients.  I talked with some of them who went through TSW.  Their skin looked so good and beautiful, I couldn't tell if they ever had eczema or went through TSW from their appearance!  There were some people with eczema or withdrawal symptoms too, but they all looked happy.  They didn't look like someone lonely, miserable and depressed  - like I was, until only a few months ago.  They said to me that they were grateful for the TSW method and Dr. Satos.

Meeting a number of his ex-patients, who successfully got over with topical steroid addiction and withdrawal, convinced me that TSW does really work for many people.  And, by the end of the day I wasn't so surprised that 97.5% of the patients healed after TSW - because I saw lots of the evidences.  Witnessing many successful cases of TSW and moisturiser withdrawal was the most impressive thing of the day to me.

On a personal note...

I have never seen such beloved doctors like Dr. Kenji and Mitsuko Sato in my life.

I saw their ex-patients constantly come up to them and cheerfully tell how they were getting on with their lives after TSW.  Dr. Satos listened to them nodding and smiling.  Some of his ex-patients told me that Dr. Satos were funny, modest and a bit like psychotherapists - they tried to understand the patients mentally as well as physically.  I saw a strong bond between the doctors and the patients.

Before I left the after-event party,  I asked Dr. Kenji Sato when he started to treat people with TSW.  He answered, "It was 30 years ago."  I follow his blog and read his books, but he never mentioned such long history of his TSW career as far as I remember.

Some links to share

If you are interested in Atopic, who organised the event, there is Facebook page.

https://www.facebook.com/atopic.info

It's currently Japanese only, but you can see some pics of their meetings and success stories.
Their event schedule is also posted on the timeline.

Atopic has their official website too (also in Japanese only).  There is a forum, Dr. Satos' blogs, TSW patients blogs etc.

http://atopic.info/

Also, I just noticed that Atopic started a petition to revise the Atopic Dermatitis Treatment Guideline in Japan here

The petition is for :

1. To revise the guideline to allow non-TS and non-immunosuppressant treatments for Atopic Dermatitis when TS-based treatments show no improvements.
2.  To revise the guideline to acknowledge the existences of TS/Protopic/moisturiser addictions.
3.  Minimal use of TS and Protopic on child patients.

Unfortunately the petition page is only in Japanese. If you happen to read Japanese, I would be grateful if you could sign the petition (only if you agree of course!).

I hope I could share some essence of the event in this post.

Lots of love and healing to everyone.

xxx

Comments

  1. Glad to hear about this. I hope that Doctos in europe will start to recognize this horrible TS/Protopic Withdrawal. Good job tommy and you are looking great.xo

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    1. Hi Itchy Mitchy, thanks for your comment :) I really do hope so too. Hope you are seeing some progress x

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  2. Thank you Tommy!! U r the best translating and providing all this information to us!! Thank you so much again!! I hope you are enjoying life much now :) xxx ahfaye byebyesteroids.blogspot.com

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    1. Thank you Ahfaye :) I just read your blog, I respect that you are doing all the house work and taking care of everything while going through TSW. Sorry to hear that you're having hard time sleeping. I can understand your feeling as I've been there too... I'm praying for your recovery x

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  3. Thanks tommy for the informative post.
    I guess moisturiser withdrawal is good but its so itchy.
    When you withdrew where u super itchy and did it spread worse?

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    1. Hello Lisa, thanks for your comment :) When I withdrew from moisturisers, my skin condition got worse. I cannot remember if the rash spread further, but my skin felt so tight that I couldn't move at all for a while! But after a few months, it felt better. To me using moisturisers made my skin itchy, so quitting them was actually a relief. x

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    2. Ahhhhh good to know tommy.
      Love ur blog.
      Thanks for all you do.

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  4. Tommy, thank you so much for bridging the gap between worlds! We would never know about all this if it wasn't for you! I recently emailed Kelly P. and I know that itsan will be working more closely with the Doctors Sato in future, wich is great news!

    This is one of the most important blog posts I have ever read.

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    1. Thank you Louise, I'm glad you found the post useful. I'm so excited to hear that ITSAN and Dr. Satos will be working together in the future! Thank you for emailing Kelly and letting us know great news! xxx

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    1. Hello Miss Kitty, thanks a lot for your comment and stopping by :) xxx

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  6. Hi tommy, did the derms says if you have real eczema is moisturizer withdrawal still effective? Or do you have to be in tsw or addicted to steroids to withdraw?

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    1. Hi Lisa, I don't think they mentioned moisturiser withdrawal on simple atopic dermatitis specifically. They mentioned how people are obsessed with cleanness these days - having a bath / shower everyday and scrubbing regularly etc. They said that such behaviours weren't seen early in our human history and might be working as a negative influence factor for eczema. Do you want to try asking your question on Atopic forum or facebook page? They may give you an answer x

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    2. Thanks tommy.
      Your a sweetie.

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  7. Very informative post, as always! It sounds like there are a lot of resources about steroid withdrawal in Japan, so I appreciate you sharing your findings!!

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    1. Hello Shiro Ninja-san, thank you I'm glad you found it useful :) Yes I'll keep sharing my findings here! Hope you're doing well x

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  8. Hi Tommy, Thank you for putting this all up. It is so helpful!! I try to not moisturize but it is so painful. Do you have any tips? I am in my 5th month and use vaseline.
    Also are we not to peel off the flakes and ooze? I didn't quite understand that part.
    No moisturizer and no peeling off crusts, right? Thank you so much!

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    1. Hello Jennifer, thank you for your comment:) I wish I had a good tip for moisturiser withdrawal for you, but I couldn't do anything for the pain but just let it be... (the only thing I could do was taking some paracetamols.) Before I found a good way to deal with the pain, I got to used to non-moisturiser and started to feel okay. Dr. Sato told not to pick the flakes or wipe ooze, because when you peel off crusts the wounds won't dry up. Wiping off ooze is the same, according to him, it delays healing. I found these two very difficult to do though! I couldn't help but wiping off ooze and picking off scabs all the time. Oh well, still healing although took an awfully long time.. x

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  9. Thanks a lot!! I want to appriciate you .
    This is a very good article!

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    1. Thank you Aiko-san. Looking forward to seeing you on Friday x

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  10. Tommy, thank you very much for posting this. I was wondering if you could clarify what you said, "They explained that only about 10% of TSW patients healed without moisturiser withdrawal, and they were all mild case patients. TSW patients who recover well are usually doing moisturiser withdrawal strictly, according to the doctors." When you say moisturizer withdrawal, does that include emollients, humectants, or protectants as well? As in using nothing at all, or just not using moisturizers.

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    1. Hello Dan, I checked the leaflet I was given. It says 'moisturisers' here mean using emollients, creams, lotions, oils, thick bandages, staying in bed all day, taking a long/frequent bath, make-up, picking up scabs, wiping off ooze and drinking too much water. Hope this helps.

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    2. Tommy, that is what I figured but wanted to make sure. Thank you very very much. Dan

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    3. Hi, after reading for a while about TSW i decided to start it along with MW.But I cannot imagine not doing anything at all about the dry skin.I will take dead sea salt baths 30 minutes a day.But after that do you really suggest not to put anything on my skin at all,and not even to drink a lot of water?I dont think I would be able to make it using dead sea salt only.

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  11. Hiya, so great to see the word getting out. oh, and i noticed if you go on the petition page, you can click on google translate so are still able to sign it :) very intriguing the non moisturing and does it speed up the process for healing, were there any statisctics on it and time frames of the patients that healed. Would be interesting to know, but dont think i could be quite brave enough to stop them altogether.

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    1. Hi Claire, thank you for letting me know about google translation!
      From the impression I got from their presentation, moisturiser withdrawal is not something to speed up the healing process - they explained it more like something 'essential' to heal your skin. In other words, they sounded like if you don't withdraw from moisturiser it's possible that you won't complete healing or you do heal but may relapse in the future. I don't know if there is any stats on this but you can ask on Facebook or their official forum.

      https://www.facebook.com/atopic.info

      Hope this helps :)

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  12. I'm not quite clear on that. Does it actually speed up the healing process? If so, by how much?

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    1. Hi Dan, I just replied to Claire's comment on that one. This is only my impression but I thought what they meant was if you don't withdraw from moisturiser it's possible that you won't complete healing or you do heal but may relapse in the future. I don't know if there is any data on this, as I would imagine that it's hard to actually compare healing speed with or without moisturiser through TSW when every TSW is different. You can ask on Atopic's Facebook forum if you are interested.

      https://www.facebook.com/atopic.info

      Hope this helps :)

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  13. I want to share what I think is very valuable formation on MW that I had just learned a couple days ago when I was out of town visiting relatives. My cousin told me he had a very small rash several years ago and his doctor gave him ts to use on it. After some time went by he went back in and complained the rash was starting to pop up in different areas. His doctor told him to stop using the ts and use a lotion for a while and the rash will go away.

    So, my cousin did just that. He used curel, something I wouldn't use because of the ingredients, but the rash went completely away in about 6 months. He never did use ts long enough to suffer much, luckily because of what the doctor told him to do on the second visit.

    Knowing this and knowing how MW has worked so well for me early on in my own tsw, I have to conclude it is best to use moisturizers or lotions, mainly in later stages of tsw, but not in beginning stages. And, to cease using them when the rash finally does go away. I know this is against conventional wisdom but it is what it is.

    Now, I am even more convinced MW is the most optimum way to go in the beginning stages of tsw, depending on individual factors and severity of symptoms of course. Moisturizers keep the raw skin from healing. The skin needs to breathe so I believe that once all rashes are gone it is important to cease putting anything on the skin and allow it to do it's thing. I hope people find this info helpful. My conclusions are just that, my conclusions, and not meant as medical advice to anyone.

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    1. Hello Dan, thank you very much for sharing the information. It's very useful. I'm glad to know your cousin got over with TSW relatively easily. I agree with you on not using moisturiser in the early stage of TSW. What I'm not sure about is use of them in the later stage of TSW. Docs on the event told us to stay cautious about starting moisturisers even after TSW, as skin condition may relapse because of them. They said they've seen many of such cases. I'm finding it hard to completely stay away from moisturisers so long myself. I know your cousin healed while using moisturisers throughout TSW, and I'm just wondering what his severity of TSW symptoms was. If it was mild, that agrees with what Dr. Sato said about 10% of people healing without MW...

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    2. Hi Tommy, my cousin's symptoms were mild. If he had used ts much longer, his withdrawal would have been more severe, and moisturizing likely wouldn't have been the best way to go. Maybe moisturizing can be useful in mild cases. However, knowing what I know now, I would have not done either if I were my cousin and if the rash continued to bother me I would look for the root cause and treat it from that perspective.

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  14. I exchanged a few emails with Dr. Fukaya just last night. His comments on diet, moisturizer withdrawal, the adrenal glands, etc are also very interesting. He says the adrenal glands function normally in most TSA cases, and diet has little effect. He also says he agrees with Dr. Sato in that moisturizer withdrawal speeds up TSW in certain cases. He is careful to point out that some people who try moisturizer withdrawal can’t handle it and go back to using TS, I assume due to the increased pain and suffering going moisturizer free causes in the early stages. He recommends moisturizer withdrawal if one feels strong enough to do it to shorten the TSW period. He also suggests using moisturizers at an older age after TSW is complete.

    http://mototsugufukaya.blogspot.jp/2013/07/a-report-about-biological-product-for.html#comment-form

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    1. Thank you Dan for sharing the information! That's really useful! :) x

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  15. Hi Tommy,

    I thank you for bringing this valuable source of information from Japan. It is a waste that I do not speak/read japanese as there are so many medical publications in Japanese that could be useful to TSW sufferers.

    I myself have stopped moisturizing on a hunch and there has been nothing but great improvement!

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    1. Hello Leslie,
      Thank you for your comment. I'm glad that you found the information useful and moisturiser withdrawal is working well for you :) xxx

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  16. Hi Tommy, would you share how many time you shower/bath a day during the MW?

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    1. Hi Beck, I used to shower once a day - although when my skin was really bad, I showered only once in a couple of days as I couldn't bear the pain of skin drying up after shower/bath. In retrospective, I probably should've showered once everyday. Hope this helps!

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  17. I am just starting my TSW and MW withdrawal , I wasn't sire weather or not to start my MW yet as I am in the middle of a huge flare up which I why I decided on TSW to start off with. However because of the moisturiser I feel that my skin isnt strong enough to heal or when I itch it is easily damaged because of the moisturiser. When is best to do MW and also when the TSW is over will the previous underlying eczema be there and still be a problem?

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    1. Hi there, I'm sorry but I cannot answer your questions as I'm not a medical professional and I quite simply don't have the answers. As I wrote in my post, some TSW docs quite strongly recommend MW. But it's not my policy to tell people what they should do - if you feel comfortable trying MW, then try it. If not, then you don't have to. Best wishes for your healing.

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  18. Hi Tommy,
    Do the Dr's Sato accept international patients for inpatient?
    I am quite interested in the female Dr. Sato that treats pediatric patients. My daughter is 3 and we strongly believe she has tsa. Is there a way to communicate with her blog regarding pediatric patients?. Thank you. I am sincerely happy that you posted this information. The more legitimate research there is the more other countries will follow suit. We just need a flow of information. Hopefully the last paper they released will help make this move.

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    1. Hi there, I just checked her website (http://www.sato-shonika.com/), but it seems that there is no inpatient facility at her clinic. The website says that you have to make an appointment in advance if you would like to visit the clinic.
      Here is some info of her clinic.

      Sato Shonika

      Tel: +81 120-81-3285 (for booking)
      Opening hours:
      8:30~11:30/16:30~19:00
      closed on Sundays

      Map:
      https://goo.gl/maps/tW17U

      Let me know if you need any further information :)

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  19. Hi Tommy,
    I'm in my 2nd month of moisturizer withdrawal and the area around my lips which I thought had recovered fully started to ooze again after I put a little bit of vaseline. What I want to know is, how do you know if your skin is fully recovered to be able to put moisturizers again? because usually my skin doesnt get irritated/ red when I apply moisturizer on it but the next day when I look in the mirror I see that it has oozed. My skin on my face has also oozed a bit after I thought it was done oozing even though I didnt put anything on it. I've read on some of the blogs that putting witch hazel and tea tree oil helps however I'm a bit skeptical, after all it can either make it better or worse and I really dont want to risk the latter.

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    1. Hello t delkar,
      I think moisturiser withdrawal, as well as topical steroids withdrawal, is a long process of healing. I understand that Dr. Sato, a Japanese TSW doctor, advises not to use moisturiser practically ever again. My impression is that some people strictly follow his advice while the others decide to use moisturiser again down the line. At the moment, because your skin sounds rather unstable at the moment, I would (and I did) leave it be without using anything until it calms down better. Also, by not moisturising your skin will try to heal quicker.

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