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 :)

Time for an update... (photos)

(19 months off topicals, 17 off all steroids)
Been a while since I posted so I think now is as good a time as any.

So what has happened since I last posted...quite a lot I guess! I have moved to South Korea to teach English for one. I was still on 300mg of ciclosporine daily when i left and i got an appointment with a derm here ASAP. The derm really does not like to prescribe me ciclosporine here. And it is EXPENSIVE. I am paying about $120 a month for my prescription. So I attempted to reduce my dose in the hope of being able to come off the meds at some point soon.

I have been on 300mg a day for a long time, over a year, so I had no idea how it would go. I reduced from 300mg daily to 200mg daily about 7 or 8 weeks ago now I think, and my skin has gone slightly crazy, mostly on my face.

Severe itching, some burning, LOTS of shedding, edema, oozing, insomnia, urgh.
I am seeing flares in places I have never had trouble with before, including on my face. Scabbing, oozing and flaking around my mouth, edema and shedding around my eyes. I have dated the pictures so you can see how it tends to flare and flake, heal temporarily, then starts the cycle again.

I am hoping this is just a flare happening because I am reducing, and that once my body adjusts it will calm down a little, but I'm feeling pessimistic if I'm honest! I am however looking into starting LDN soon so hopefully that will help. This is an expensive medication to take overseas!

Anyway, less chat, more pictures.

I intend to update once I have started LDN/began to reduce further so hopefully more updates soon.



Photos, oldest first

16th July 2015
Skin around my mouth had been dry for a long time, things started to get crazy on this day.

face very swollen, dried ooze around mouth

^^ trying to stop the ooze at work!! argh

^^^ post-ooze. very swollen around the eyes. smiling though!

17th July 2015, the next day.

^scabbing around the mouth. neck is very red with elephant skin


18th July...things get a bit crazy

^ burst into tears when I woke up and saw this. Took a shower and gently exfoliated. Then, applied zinc and lemongrass balm.

^post exfoliating and balm application.

^Later that day.

^comparison between AM and PM. My shower/exfoliation and application of balm really helped.

20th July 2015

^things still very calm!

21st July 2015

^feeling smug with my rapid healing!!


Things have stayed pretty stagnant since. Residual dryness around my mouth and a sore neck.
Sorry for bombardment of photos but it is useful for me to see them all together and hopefully others' will find it useful too!

Hope everyone is getting by! <3

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

Happy 3 months to me!

Today marks my 3rd month off topical steroids! Big milestone :)

I'm sure some of you who follow my progress will know that when I quit TS I was actually hospitalised and put on a short course of oral steroids which I had to taper down, so although this is a big milestone I'm actually only 1 month steroid free but I'm still proud I've reached this milestone!

When I first started this journey I was reading the blogs of people who were so far into their progress and never imagined I would have the strength to make it to those markers, but the time has gone so much faster than I imagined and I'm optimistic for the future.

Just a short one for today really, I want to do a post soon about MW, there's always a lot of questions surrounding it and I'd like to have a blog post of my own that I can refer to when I'm asked questions. I'll do a bit of an update on where my skin is at then too.

Hope everyone is doing well

S x

Feelin' Purple

So today I post this song because it's appropriate (and also because it's great!)...I'm definitely feeling (and looking) kinda purple!

I'll post some photos for you here but the colour really doesn't show..I'm a lovely shade of violet really I am!
I'm flaring now, I'm sure of it. All the joint areas are suffering a bit, like insides of my elbows and my wrists are particularly sore, but I'm..ready for it...2 weeks steroid free! and 75 days topical  steroid free. I'm also well into MW now too, I can't remember how far, i think 3 weeks or a month?
Oh and I've got a bit of sexy elephant skin going on on my hands now too...here's the photos

Anyway even though it looks and feels bad today I know this is a cycle and I trust the process so I'm keeping a sense of humour and positivity about me.

How's everyone doing?
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!