I know that I haven't blogged about my skin condition for ages. To be honest it's because I wasn't sure what was going on with my skin.
Since November last year, my skin gradually became more and more aggravated. I was confused because the way my skin worsened was somehow different from any of the other times I'd experienced before.
I felt that I needed to see someone who could give me advice on this. I've been fighting TSW since 2008 and I decided that it was the time to ask for help.
So I booked a flight to Japan, then hopped onto a coach. 21 long hours later, I was in 'The New World'.
Well, this chaotic place is actually called 'The New World(新世界)' in Osaka, Japan. Yes - I was there to see Dr. Kenji Sato.
I was very nervous. I wasn't originally too keen on meeting him as a patient. I had seen so many dermatologists and every single time I had ended up disappointed. EVERY SINGLE TIME! What if this ended up just like all the other experiences? What if he says my skin won't heal or improve for some reason? Feeling like I was facing that kind of verdict really gave me butterflies in my stomach.
Hannan Chuo Hospital in Osaka, Japan |
At Hannan Chuo Hospital
Hannan Chuo Hospital is a relatively big hospital. Their dermatology department was located on the ground floor. I was escorted from the reception to the waiting room by a friendly nurse. I handed in 4 pages of my skin history beforehand. I was called in Dr. Sato's office at 10:00 sharp.
The first
thing he said to me was that I was the first case he ever saw who
got withdrawal symptoms from Protopic alone. He said that he'd seen
many people used Topical Steroids and Protopic together and then got
withdrawal reactions. He thought that Protopic alone would cause as
severe withdrawal reactions as topical steroids, and I happened to prove
that his presumption was correct.
Dr. Sato then asked
about my life style in detail - how often I exercise, what I eat and
how long I work etc. My answers to these questions seemed mostly fine -
except I work too long hours (normally 14 hours/day. Dr. Sato told me
to cut it to 10 hours/day). Also, he diagnosed me with seborrhoeic dermatitis
by looking at my face. And, this was the reason why my skin was
looking strange. He recommended me to put soap
foam on my face for literally a second (I hadn't used a soap on my face for
ages) to deal with infections. He didn't prescribe Nizoral, let alone
topical steroids for it unlike other dermatologists.I took out my small notebook and quickly jotted down every bit of advice he gave me. Also, Dr. Sato kindly and patiently answered every single question I asked (it wasn't few).
The Q&A
Here is the list of the Q&A. (Q.s are my questions and A.s are Dr. Sato's answers)Q. Have you seen any cases that patients healed from Protopic Withdawal?
A. Yes, but Protopic Withdrawal appeared to take longer to heal than Topical Steroids Withdrawal. But it will heal.
Q. I feel that my immune system became low after withdrawing from topical steroids and protopic. Would my immune system eventually return to normal?
A. Yes, it will.
A.
Some people, especially some babies, have dry skin where you can see
very small flaky skin. In such cases, applying moisturiers can improve
their skin condition. However, using moisturisers for people who used
topical steroids for a long period usually delay healing, so it is not
recommended.
Q. My general skin condition became so much worse since withdrawal. Does that heal too?
A. Yes, it will heal.
Q. I feel that my skin gets worse during in cold weather. Would it affect healing?
A. From what I've seen, it looks like cold weather can slow healing a little. Q. My general skin condition became so much worse since withdrawal. Does that heal too?
A. Yes, it will heal.
Q. I feel that my skin gets worse during in cold weather. Would it affect healing?
Q. I've been having a lot of eye mucus since several years ago. Does this heal?
A.
I just had a patient with the same symptom. The patient got better by
the time he left the hospital. So yes, it should go away. (He then
prescribed anti-bacterial eye drops.)
Q. After patients are healed after withdrawal, it is okay to wear make-up?A. Try not to - as make-ups can moisturise skin and some people have another rebound because of that. But, I tend to say that it is fine to wear lipsticks and eye liner as they are only small parts of your face.
Q. Is it okay to apply sun screen?
From what I saw, Dr. Sato's style was to discover what is hindering healing by looking into your life style and medical history. He doesn't apply one-to-fits-all solution (because there isn't one), instead he listened to each patient and provides specific medical advice. When he thinks that medical help isn't necessary, he would just leave it as it is. For example, he said that my anemia and low blood pressure shouldn't need treatment and suggested I stop taking iron supplements as they sometimes affect stomach and skin badly ("Of course there are cases where you do need those supplements and treatment", he added.)
Topical Steroids for Acne?
During our conversation, Dr. Sato asked if I had acne before. The question was somewhat unexpected. I said yes - in fact, I had terrible acne when I was a teenager. "Did you use topical steroids for the treatment?" asked Dr. Sato. I silently blinked several times - I remember having to use so many tubes of "some ointment" to treat my acne (and how utterly useless they were), but I couldn't remember the name of it. It was more than 15 years ago anyway. "I thought you wouldn't usually prescribe topical steroids to treat acne." "Actually, some dermatologists do prescribe topical steroids for acne. I personally thought it was a problem, so asked a council to stop that. They banned topical steroids to treat acne, but then they took the decision back the next year." The possibility is that you were prescribed topical steroids for acne without knowing what it was. I thought that that could've explained why I've been still suffering from TSW after 6 years of my first withdrawal - but I'm still not sure.When leaving his office, although all I was given by Dr. Sato was a prescription for anti-bacterial eye drops, I felt that I was given exactly what I needed - the confirmation that a hope is still there and that I'm on the right path and I can heal.
I visited Dr. Kenji Sato in March. And it's been 2 months when I'm writing this post. I would like to share how I'm doing now in another post hopefully sometime soon.
Please sign the petition!
Atopic (Dr. Sato's patients group) are gathering petition signatures online to change the atopic dermatitis treatment guideline by Japanese Dermatological Association.
I would really appreciate it if you sign the petition.
http://www.change.org/en-GB/ petitions/%E6%97%A5%E6%9C%AC% E7%9A%AE%E8%86%9A%E7%A7%91%E5% AD%A6%E4%BC%9A%E4%BD%9C%E6%88% 90-%E3%82%A2%E3%83%88%E3%83% 94%E3%83%BC%E6%80%A7%E7%9A%AE% E8%86%9A%E7%82%8E%E8%A8%BA%E7% 99%82%E3%82%AC%E3%82%A4%E3%83% 89%E3%83%A9%E3%82%A4%E3%83%B3- %E3%81%AE%E5%86%85%E5%AE%B9% E3%82%92%E6%94%B9%E8%A8%82%E3% 81%99%E3%82%8B%E4%BA%8B%E3%82% 92%E8%A6%81%E6%B1%82%E3%81%97% E3%81%BE%E3%81%99?lang=en-GB
Some people said to me that Japan is advanced when it
comes to TSW - the
reality is that many doctors prescribe topical steroids too carelessly
here (perhaps in your countries as well). Even a beauty magazine, which
I picked quite randomly, recommends medium class topical steroids for
rough skin. http://www.change.org/en-GB/
Atopic and Dr. Sato are trying to change the guideline, so that non-TS treatments for atopic dermatitis will be officially accepted by Japanese Dermatological Association when TS-based treatment isn't working for patients.
Your signature on the petition will be a great help.
Thank you for reading my post.
xxx
Hi Tommy,
ReplyDeleteGreat write up! Was this the Dr Sato who similarly advocated MW?
Also, can I have your permission to share this page over at EczeMag.com? I will do a linkback to your blog and credit your work accordingly. This is too great of a resource to not share to others!
Rgds,
Leslie
Hi Leslie, thank you for your kind comment - yes it's the Dr. Sato who recommends MW. Of course you can share my post on your website. You've got such an informative website on TSW! Very impressive! x
DeleteGreat post Tommy as always, thank you. Glad Dr Sato is helping you :) x
ReplyDeleteHello Miss Kitty Fantastico, thank you for your comment. I'm glad that your skin is doing well too (Just saw your blog post, and you look amazing!) :) x
DeleteHow lucky you are to meet Dr Sato in person Tommy! He sounds like a caring doctor and has a reputation as a TSW expert.
ReplyDeleteThanks for sharing your experience and recording the interview for us.
Hi Louise, thank you for your comment. Yes, he seemed nice and honest. I feel incredibly lucky that I could see Dr. Sato and wished I had lived in Osaka. I hope we can find a TSW doctor in the UK too...!
DeleteHi Tommy, I would really love to know how you got the appointment. My twin sister is really stuggling with this and I would love to get her treatment in Japan with Dr Sato.
DeleteWe are in Ireland. If you have any information about how to go about this, I would really appreciate it.
Hi there. You can email jimukyoku@hannan-chuo-hsp.or.jp to make an appointment. For more details, please check this post https://skinofrose.blogspot.com/2014/10/consultations-with-dr-sato-at-hannan.html Hope your sister will feel better soon. x
DeleteTommy, thank you for sharing this experience. Very insightful!
ReplyDeleteHi Dan, thank you for reading my post. Hope you're doing alright :)
DeleteAs always thanks for sharing your story and recent news in Japan! It's great you are sharing your experience about protopic withdrawal as i still hear some ppl opting for protopic after not being successful in TS treatment thru their dr. more ppl need to know about protopic side effects. thanks Tommy! happy healing :)
ReplyDeleteHi Ahfaye, how are you doing these days? I tried to find your blog but couldn't find the link - do you still have your blog? I had no idea that I was quite a rare case of protopic addiction... thank you for your comment :)
DeleteTommy! ありがとう!英語圏の方の署名が増えているので、どうしてかな?と思ったら智子さんだったのね。すごくわかりやすい記事だね。HPなどで紹介してもいいかな??
ReplyDeleteAikoさん! お久しぶりです、お元気ですか?メールさせて頂きました。また近々お会いしましょう!xxx
DeleteThank you for sharing this post Tommy. I agree with Dr. Sato. The areas where I used to apply Protopic on my daughter's face and body have been the most difficult to clear up during the withdrawal process. Please check my blog topicalsteroidwithdrawal.com
ReplyDeleteHi cllyann, thanks for your comment I'll definitely check your blog. x
DeleteGreat post Tommy! It's sad to Hear that protopic withdrawal take longer to heal than ts. I used protopic longer than ts. It became my maintenance ointment :(
ReplyDeleteHi Itchy Mitchy, hope you're doing well and healing nicely. x
DeleteWow, congrats on getting this far and on meeting a great dermatologist.
ReplyDeleteDo you know if Dr. Sato speaks English? It might be worth my while paying him a visit as return flights to Australia are so cheap. Only problem is I don't speak Japanese! But if he speaks English or would be able to communicate with me it might just be possible.
Hi ChrisN, thanks for your comment and sorry for this late response. I heard that he speaks some English, but I'm not sure. Maybe it's worth asking on atopic.info?
DeleteHi Tommy! Im in TSW for a 28 month,and still have facial flares. So glad for you that you could visit Japan and wonderful Dr. Sato. How are you doing now?
ReplyDeleteAnd another question i wanted to ask you. Do you think ist possible to get a email consultation with Dr. Sato? I actuallu was thinking about visitting him, but before this i wanted to get kind of consulatation. I can translate my letter to japaneese of course in bureau and pay for consultation. But i dont know how to get in touch with him.
Hi Minnie-Cat, thanks for your comment. Have you tried atopic.info? It's run by Dr. Sato's patients group and they have a forum there and I assume that some of them speak English. I will update you when I find some info regarding Dr. Sato's consultation.
DeleteThank you so much for your answer! No i havent try, but i will try it. I will try to translate via google and make some post. Thank you Tommy. Im in my 28 month of TSW and still flaring on my face, thats why i'm worrie,its not healing,i am actually feeling desperate, sadly.
DeleteSaw you progress pics, you look beautiful! Its priceless to have your life back!
I KNEW IT. I knew my derm messed me up with all those acne treatment he gave me. I went to my dermatologist for acne problems and months later it became a eczema problem on my face. I'm so glad you met with Dr. Sato and posted your visit here! It really helped me a lot. Thanks once again!
ReplyDeletehi!
ReplyDeletemay I ask did your skin improve significantly after start using soap again? thank you so much for your sharing! I will be seeing dr sato in mid apr, hope we can sort out why my skin heal so slow in the past 1.5 year :(
Soap doesn't help healing skin (neither it doesn't aggravate), but I find it useful to prevent infections. Good luck on your visit to Dr. Sato!
Deletehi there. i wish to make appointment with dr kenji sato however i can only speak english. how do i make appointment with him? do you make appointment through email or phone calls?
ReplyDeleteHi! I think you can make an appointment by email. The email address of his office is jimukyoku@hannan-chuo-hsp.or.jp, which I was given back in 2014 - hopefully it still works. He speaks English so the consultation should be no problem. Good luck!
Delete