Is it worth it?

So, checking in after a long, long break! Things are really so great right now that I forget all about TSW for long stretches of time - something I never thought would happen. I have successfully reduced down to 7.5mg of MTX  a week (down from 20mg a week) and my skin has never been better. There are parts of me I thought would never heal that are silky smooth and total non-issues now. It is magical and, to me, so worth the wait. I am by no means healed, I won't feel comfortable using that label for a long time, and certainly not before I'm finished with immunos. But I feel happy with my progress & hopeful as my 4 year anniversary approaches in Jan 2018!

Recently, a close friend asked me if using steroids was my biggest regret in life. I didn't even have to think about it. I don't regret using steroids. For starters, the decision was not really made by me, doctors have been prescribing the creams since I was 3 months old. But in a general sense, I don't regret my steroid use and subsequent TSW. TSW has taught me a lot of things about my body, about modern medicine and about patience, and those are lessons I will carry with me. I've also met some fantastic people along the way who have supported me, people who are so generous and kind. I feel lucky to have met them! As if that wasn't enough, my skin has never been better and I can finally feel that there is an end in sight. So no, I have no regrets. And YES! It is absolutely worth it :)

As previously mentioned I am a bit rubbish at checking my comments here, so if you want to get in touch just drop me an email at sarahecg@gmail.com

S x

LDN - Low Dose Naltrexone

I'm going to be blogging about starting LDN very soon. I took my first dose yesterday, a tiny dose of 0.5mg because I want to work my way up slowly,hopefully with the aim of coming off ciclo.

I have a lot of time to kill this week before students come back to school so I've been reading a lot of medical reports and watching a lot of video blogs about LDN and found this one very interesting. It explains LDN clearly. It's a little long but I thought I would post it for anyone who is curious about this immuno-regulator.

& here is a shorter video for those who aren't sat at a desk clock-watching all day...

For anyone who is curious or interested in starting this treatment there are a number of very useful facebook groups where you can find lots of information...

Click the links to be redirected

 - LDN and TSW 
 - LDN Research Trust 
 - LDN Users Chit Chat Group

There is a lot of useful information on these sites and so many helpful people there who have reassured any worries I might have had about starting LDN.

I will be sure to update my blog with my progress :)

1 year

(and a bit! - i meant to post this over a week ago, oops!)

So January 10 2015 marked 1 YEAR OFF TOPICAL STEROID CREAMS!
I know..I can't believe it either. I know it gets said a lot but when I started this journey, I read blog posts like this one SO enviously, I just couldnt imagine getting here, but I'm so glad I did and I don't regret any of it.
There isn't really much to report photo wise, my skin has been near-perfect for months, I actually just started to get a little flare on my worst bits (my torso and neck) but it's been nothing like what it used to. I am still on ciclosporin though so I guess we can see how it goes once I aren't anymore.
It's also worth noting that I've only been off ALL steroids for 10 months (I was on a 2 month course of pred after 1 week of TSW) so maybe that's why I haven't had my dreaded anniversary flare yet.
I've been SO terrible at updating this blog, but to be honest you can just take that as a testiment of how well I have been doing, it's nice to not obsess over facebook groups and blogs, life is normal and pretty great :)

So for those of you still fighting the good fight, I hope you're pushing on - can I call myself a vet yet?! Haha. And those of you just starting out...PLEASE don't be discouraged by this post, by the length of time it takes because it does get easier, and time just flies!

Lots of love, and thank you to every single person that's been there for me in the past year, it's been difficult but so so worth it :)
S x

Warrior

I've been really getting into yoga lately. My skin is okay, it stings a lot when I sweat but I feel like the exercise is good for me. Yoga's particularly good because it's not too strenuous, the Sun Salutations mean my heart gets racing but it's not too excessive to make me feel like I'm gonna pass out!

It also helps that I've joined a lovely yoga school called White Wolf Yoga which is based in a great venue just on the outskirts of the city that has a rooftop terrace. Yoga on the roof with a cityscape sunset setting, I can't argue with that!

Anyway, I don't know how many of you are familiar with yoga but I'm sure you'll have heard of the Warrior Pose:

It's a great pose and I always spare a thought for all the TSW warriors whenever I take it. I know I've talked about this before but I really can't put across enough how amazing everyone in the community is, we're such a strong, supportive group and I'm proud of us all!

If anyone fancies releasing their inner warrior here's how:

 Keep on keeping on warriors x

Rock, Taper, Scissors

So the day is finally here..I'm starting to taper off ciclosporine!
It's really scary but really exciting. The derm was a bit reluctant as I still have some signs of stubborn eczema and my bloods are great with no sign of any crazy side effects or anything. But I want to start making the change while I can. I'd much rather start to taper slowly while I'm in a good position to do so than have to stop abruptly for whatever reason. I've been on ciclo for 6 months now and on my maximum dose for 4 of those months which is enough.
I've reduced from 300mg daily to 250mg daily - not a huge jump but just the fact I am starting to taper makes me happy :)
Hopefully I won't see too many crazy flares and I can continue tapering. I want to be totally off ciclo within the year if possible.

In other news my package from the Home Apothecary arrived today (see my second-to-previous post for more info) and I couldn't be more excited! The parcel itself just smelled amazing and I can't wait to have a long salt bath and cover myself in yummy smelling all-natural balm!

I guess today is one of the good days.
S x

Allopath...

A great little video, credit to Corinna Lee from one of the great TSW Facebook groups I'm a member of.
Sums up the medical community brilliantly I feel!

Day 188 photo update

As promised here's a photo update! My skin is doing so well now, couldn't be happier, so smooth. I look a bit weird, keep stroking my skin in public!

Here are some before and after photos, most of the before photos were taken around 3 weeks ago. It's worth noting that I'm still on ciclo, but I was when I had these flares too so I think there must be some natural healing going on too!

(Bottom left taken today)

(Bumps on the left, couldn't even see my tattoo my skin was so bumpy and elephant-like! Right is today)

(My neck and décolletage are two of my biggest problems,  they're so smooth right now! Right was taken today)

So yeah I'm super happy with the way things are going. I have a derm appointment a week on Monday and I'm going to discuss reducing my ciclo-finally! My flare 3 weeks ago was one of my worst but it was worth it, as it always is.

I hope everyone's doing well, it's so hard to push through sometimes when you feel like you'll be in a flare forever but I've got faith that we will heal, keep on keeping on :) x

From pharmacy to dustbin

Only one destination for this bad boy and that is the bin, total toxic rubbish!

Had a derm appointment and told him I'm happy with my progress on ciclo and he says he is happy too but why don't I try some of this too?! Couldn't be bothered to argue so here it is in my bag of Meds!

So glad to have people who know what they're talking about who I've met on this journey because I know not to use this nasty stuff

Good news is I have 2 more months at least on ciclo :) which means hopefully my skin won't be out of control for my holiday in Ibiza in 4 weeks!

Hope you're all well x

Fed up

Writing this from my desk because I'm miserable and distracted at work. So I already mentioned that I'm flaring but instead of improving with daily DSS and ACV baths it just seems to be getting worse :( it's nowhere near as bad as it was before I went into hospital but I'm just so angry and frustrated that my skin should still be this bad when I'm still on prednisalone and ciclosporin :( 

Even my face/cheeks are rashy and swollen which is something new. No amount of antihistamines will make the swelling go down so I look like I've been in a fight currently. I'm just feeling down and fed up because I haven't even started my journey properly this time around yet and I'm already sick and tired of feeling uncomfortable in my own skin 

Moan moan moan

Flaring

Little update about where I'm at right now

So I finished my second course of antibiotics and, as I predicted, I'm flaring again, but nowhere near as bad as in week 1 of withdrawal as I'm still on 20mg of pred a day (still reducing by 5mg every 5 days)
A few people have told me that flaring is normal while reducing pred and also that antibiotics contain anti inflammatory properties so it's normal to flare when coming off those too, which is all good to hear, I was really worried about my flare happening while I'm still on oral steroids, made me scared of what it will be like when I stop completely. And also the fact that I'm on ciclo, i thought this would prevent flares from happening, but then I suppose it is nowhere near how it could be so I'm grateful for that.

As for myself I'm still doing pretty well, nowhere near emotionally/physically drained as I was when I first quit everything, so the meds must be helping. If my skin stays this way throughout the whole of my withdrawal I'll be pretty happy (i know this is unlikely!), it's far from perfect but it's totally bearable.

I bought some dead sea bath salts last week as well as some apple cider vinegar which lots fellow tswers have been raving about and when I took a bath when I first flared I noticed I was a LOT less red and itchy afterwards, just more dry which again, I can cope with.

So overall I'd say I'm about a 7/10 today, which is a definite improvement from the -1 i felt when I first withdrew.

I'd be interested to know people's stories regarding antibiotics/oral steroids/immunosuppresants and their flare patterns, maybe I can work out how long I can expect to flare, although I know everybody is different.

Hope everyone is doing well and staying positive, I know I say it all the time but I'm really grateful for all the love and support everyone provides me and other sufferers with!

All the love in the world
S x

Introduction

Welcome to The Thick Skin, where I document my journey through Topical Steroid Withdrawal in the hope for clear skin! Please read my story and visit ITSAN.org for more information about TSW.

MY STORY
Hi! My name is Sarah.

I am an ex-pat from the UK living in South Korea (just to make things more complicated for myself obviously ;) )

I have suffered from chronic eczema since I was a baby and I have never really found any relief. By the age of 22, I have tried every single kind of eczema remedy you can imagine. ''Have you tried..." YES. YES I BLOODY WELL HAVE. 

I had also used topical steroids ever since I could remember but my skin just kept getting worse. Doctors would prescribe me stronger and stronger creams but nothing would work. I felt like my skin was on fire, I would cry whenever I got out of the shower because I felt like I had severe sunburn all over my body. 

On 10th January 2014, after some frantic googling, I found ITSAN

After a quick browse through the ITSAN website I became educated about something called Red Skin Syndrome, a condition where the skin becomes addicted to topical steroids. The result of red skin syndrome is that the steroids used to improve eczema actually end up making it far worse. This is explained a lot better on other websites, such as the immensely supportive and useful ITSAN website. 

Since finding the ITSAN website, I quit all topical steroids. This blog follows my journey towards healing.

My intention for thsi blog is not only to vent  my frustrations (and believe me there are a lot) but also to spread awareness. If you have used topical steroids for a long period of time and your skin is worsening, there is a good chance you are addicted. PLEASE check out the above links and educate yourself, this journey has been absolute hell but I would not take it back for anything in the world.

It is not easy but while topical steroids might have thinned my skin, my metaphorical one really is thick, most eczema sufferers will be the same. We're used to funny looks in the street and well-meaning strangers suggesting obvious remedies and we're used to being treated differently because of our skin, almost as if we're contagious. So, I know I've got the strength and willpower to give up my topical steroids. And so do you!