Here are some news from Japan.
The team of Kochi University and Osaka University found the reason why warm temperatures cause itchiness (article here).
Chiba University discovered that Protein "Sox4" can suppress chronic allergy and eczema. Unfortunately the article is behind a paywall, if anyone has a subscription to Nature Immunology they can find out more for themselves here.
Regarding Periostin protein, Dr. Mototsugu Fukaya is apparently interested in the theory and is starting clinical trial on the effects of clofibrate. I am taking part in Dr. Fukaya's clinical trial on clofibrate. And based on his hypothesis, clofibrate would only work if you have history of topical steroids use. If clofibrate proves to be effective, would you go back to topical steroid?
On the other hand, Dr. Kenji Sato seems skeptical on the theory stating on his latest blogpost "the new theory is trying to explain eczema chronicity from the allergology perspective. Basically, eczema is not related to allergy, therefore this reasoning would do nothing." He also wonders that this may be propaganda by media to "conceal the fact severe eczema is triggered by topical steroids" by offering the new allergy theories on eczema.
Hi
ReplyDeleteI've been reading your blogs and it's been interesting to see the improvement in your skin. I'm still going through flareups, oddly enough it all started when I was living in Japan and had to wait 5 months before going home to start treatment. I was given a steroid cream to get rid of an eczema patch, it was all downhill from there.
I can definitely relate to your feelings of worry and upset. You're not alone at all and it will get better.
宜しくお願いします
Hello Heather, thanks a lot for your comment and kind words. So you've been to Japan! It's nice to hear from someone who's been to my motherland as I am a bit of homesick recently:( I'm sorry that you got your flareups there. Are you off steroid too? こちらこそ宜しくお願いします:)
Deletehello Tommy.
ReplyDeleteI have! I live there for about a year and half. I miss it a lot. I can imagine you'd be homesick, but hopefully you can get your favorite Japanese foods and watch the shows you like at least. That's what I do. Whenever I get nostalgic I make お茶漬け and 玄米茶 and it always cheers me up.
I've been using protopic for 4 days only on my chin but it makes my face flush and burn so I'm going to wean off of it starting tomorrow. last think I need is ANOTHER rebound flare.
it's so easy to get your hopes up and then get discouraged again, but I hope things turn around for people like us.
I haven't used a steroid cream at all since October. since then I've been on 2 antibiotics, rosacea medicine, all sorts of treatment. each day is a new test to see what works and what doesn't. I have increased my vitamin intake and have cut out gluten, sugar, and any sort of fast foods and while I don't know if that helps a lot, it gives me peace of mind to know I'm at least putting good things in my body.
この時期が一番大変なんですが、元気を失い、ストレスがたまる際には、ヨーガをしたり、お茶をのんだり、気持ちいいを日記につけたりするこどで少しリラックスできるようになります。
Tommyさんの肌が非常によくなってきたと思いますよ。
I hope for your continued success!
Hi Heather, WOW your Japanese is really good!:D Where about did you live in Japan? I'm so happy to have you here. I love お茶漬け and 玄米茶 too, they are very healthy. Many people know green tea but not many know 玄米茶. I was using Protopic too but started getting herpes and other infections so stopped it. I completely understand how you feel about eczema. It is frustrating and makes me sad to have such a nasty skin condition, but the only thing I can do is to hope for the better future. I really hope you get better too Heather:)x
DeleteHi Tommy. Thank you but I still have a long way to go until fluency. Japanese is a tricky language but I enjoy learning it.
ReplyDeleteI lived in Kansai for a year and a half or so. I really miss it, especially the food. Luckily I live in a city where there are a lot of Japanese supermarkets and restaurants. Still, I can't find 和風おろしオムライス. haha I suppose I'll need to wait until I return to Kansai, maybe next year if things look up.
I always thought 玄米茶 has a sweeter taste than 緑茶. where are you from in Japan?
Today is day 5 of using protopic, I'm trying to wean off since I'd rather use less addicting creams on my skin. still, it got a bit red this morning (I hadn't used it in 2 days).
what is confusing for me is I have two conditions: seborrheic dermatitis and steroid-induced rosacea. it's hard to know where one condition ends and another begins on my face. I never experienced the former until a few months into my withdrawal. maybe I'm genetically pre-dispositioned and the steroid exacerbated what was to be.
It's very frustrating. sometimes you feel hopeful, then you feel depressed. I never stop thinking about it. so I try and journal about it, how I feel, my triggers, so-on. I find that feelings always seem worse in my head, go out of control. but once I write them down, they don't seem so bad. I take each sheet of paper, fold it, and keep it out of sight. it helps sometimes.
I feel like right now the only thing people like us can really, really control is how we feel and how we process it all. it's all self-coaching. easier said than done, but it helps me get through tough days.
what do you do to get your mind off things? do you use any sort of cream at all?
thanks Tommy, I hope you're doing well otherwise!
Hi Heather. I am from Kanto but always wanted to live in Kansai. I visited Kyoto and Kobe and loved there! Ahhh you mentioned 和風おろしオムライス, I now have a craving for it! Are you from NY? I've been there once and liked it very much:) It sounds like you are managing your mental well-being better than I am. I just tend to focus on my job (I currently work as a home-based web designer and marketing manager) and listen to music to take my mind off it. Sometimes browsing ITSAN forum to see how other people are doing. Are you on ITSAN online forum? There are many people on the forum discussing different topics on steroid withdrawal, so if you aren't yet it may worth checking:) http://itsan.org/ You are definitely right about self-coaching. It's been too much ups and downs (mostly downs for me). I didn't use any cream at all, although I just started clinical trial since 2 days ago so have to use ointment once a day. But otherwise I don't use any cream when I have flareups. About Protopic, I wouldn't recommend to use it for a long term as I thought it was much stronger than topical steroid and messed up my immune system (I used it for 2 years). Mind you, it may be just me, because we all have different body systems and one of my friends had no problem with it so you may be fine :) x
DeleteTommy,
ReplyDeleteI hope you're doing well!
I am! We're going to be hit with a pretty bad storm tonight but luckily I have off work tomorrow and can relax with お茶漬け, my comfort food.
I've been reading a lot of books on meditation and organizational thought process. It helps, not always, but I feel much better than before so it's a start. It's coming in handy right now as I'm having a terrible flare, something akin to perioral dermatitis. I was fine a few days ago but I've been a week straight without using the protopic, I can only wonder if it's a bad response but I have a doctor's appointment tomorrow so we'll see. the journey continues...
I've checked out ITSAN, it has a lot of good resources and it's nice to hear from other people who endure the same kind of experience! when did you find that website?
I hope this new cream is working well for you. How has your skin been recently? what do you find most soothing?
Thanks for the advice :) I'm just so scared to go back on anything that can get my skin addicted to it.
Fingers crossed for both of us!