2.5mg of Methotrexate...

...And still doing brilliantly. In fact it feels like with each reduction my skin gets better and better.  I feel fizzy with excitement! I don't want to jinx it by speaking too soon. This journey has been too long and, at times, disappointing to really get my hopes up. But I can see improvements every day and I'm down to just one little methotrexate pill per week!

I was browsing over my old pictures that I took right at the beginning of my journey, when I was still basically on steroids. I can't believe it's the same girl in those pictures - both physically and mentally.

Physically, I can't believe I lived for so long with skin so bad, and just accepted the non-committal and uncaring 'solutions' from ambivalent doctors. Yes, I've suffered a lot these past 4 years, but I took control and I look (and feel) so much better for it. I never thought I would have the skin I have now.

Like pretty much everyone, I was so scared of starting TSW, I think I went through all the stages of grief.  Denial - surely this can't be happening to me? It seems so scary and so serious and I only ever did what the doctor told me to. Anger - god, the anger. I've never been so angry in my life than I used to be in the derm's office. I wanted to shake some sense into pretty much every doctor I saw. Bargaining - taking oral steroids that the doctors pushed on me after 1 week, just out of desperation for relief. Depression - obsessively scrolling through the facebook groups, reading every blog I could find, not leaving my room, cutting contact with people who weren't my TSW online friends, crying in the bath...you name it. BUT finally, acceptance. It took me a long time to fully accept and to shed the anger and depression - I don't think they ever really leave you but they sit on the back burner eventually. I've made my peace with TSW and I'm grateful for the life lessons it has taught me so far.

This is a pretty long and emotional post but I feel that (hopefully) coming to the end of something which has been so horrific, but at the same time so transforming, is worth the extra words.

I plan to post some pictures of my skin soon which I haven't done in a long time. I hope everyone is doing well and that this post gives you all some hope :)

I still receive emails from time to time from fellow TSW'ers and I'm always happy to help/chat, so if you feel like you need a TSW friend (mine have been so helpful!) just drop me an email at sarahecg@gmail.com

S x

5mg Methotrexate...

I did not think I would ever be able to make this post! I've successfully tapered so so so slowly from 20mg of MTX per week down to 5mg per week. That's 8 pills down to 2! I'm so happy and excited with how things are going. I can realistically hope to be off my MTX in the next couple of months if I follow the slow slow taper I've been doing so far. I'm almost there and I can see the finish line. My skin is fantastic and I can't believe it. I thought coming off MTX would be so hard but so far its been a breeze (I dont want to jinx myself eeek!). But slowly slowly slowly has been key. I'm posting this very close to my 4 year anniversary. What a journey. Just 2 little pills per week to lose and I can officially say I am med free. I'm so excited about my progress and wanted to share! I hope it can serve as an inspiration for those who worry about coming off immunosuppressants. Slow and steady wins the race!

I will be doing a picture update soon. I hope everyone in my lovely TSW family are doing well and are keeping the finish line in sight.

<3

Checking In

It's been a while since my last post so thought it would be time for an update.

I'm doing really well lately. I've been on methotrexate for 5 months now, 4 months at 10mg and 1 month at 15mg. I've managed to sucessfully wean down from 300mg of cyclo, I'm currently on 150mg. I've been dropping 25mg per 2 weeks. So I took 300 daily for 2 weeks, 275 daily for 2 weeks, 250 daily for 2 weeks, etc etc :)
The first week that I do this my skin gets angry and I get these HUGE pimples that look like bug bites...

 But by the second week this subsides and I'm ready to drop down again. I really can't wait until I'm off the cyclo for good. Going to be a good feeling :)

The weather has been getting warmer here in Korea and I've been making the most of it by swimming in the sea and catching some sun, my skin loves both :) I'll be moving to hot, humid and sticky Vietnam in August, so I hope my healing can continue in a new environment!

Here are some pictures of me exploring Jangdeung beach, about a 30 minute drive from my apartment. My skin loves the sea!

Anyway that's all for my check in :)

Hope everyone is doing well xx

Methotrexate week 3 and Thailand pictures

I have been taking Methotrexate for just over 3 weeks now and wanted to write a little about my experience so far!

I also just got back from a great trip to Bangkok in Thailand so thought I could share my pics here too :)

First off..methotrexate! So when I last posted I wrote about my ridiculously complicated drug schedule, it's getting easier to remember as time goes on but its still unbelievably complicated and I can't wait until I can transition to taking my immunos once a week once the MTX kicks in!
I took my first dose of methotrexate on Friday 5th Feb, two 2.5mg pills in the AM and two 2.5mg in the PM to make a total of 10mg a week. The morning dose went fine, and I took 150mg of cyclo in the afternoon as directed. When I took my 8pm dose of 5mg MTX thats when things started to get a bit...weird.
Firstly I started to feel SUPER dizzy and just...spaced out.. is the only way I can really describe it. I've taken psychedelics before and this genuinely felt like a toned down version of this. I felt SUPER weird and sick. The spaceyness subsided by Saturday morning and I was left with just feeling super super sick. I also had a horrible chemically taste in my mouth. By Sunday afternoon it had all subsided.
The next week was much better, I didnt get any of the crazy spaciness, nor the sickness, just a little bit of the chemical taste. By week 3, I had no weird symptoms at all, so I'm happy with that. I think the weirdness was just my body adjusting to a new drug in its system.
I'm really hoping things continue to go well so that I can wean myself off the cyclo and onto the MTX fully.

Anyway here are some pics of me enjoying the crazy Bangkok heat! It was hot and sweaty and sticky and my skin fought with me a little but ultimately didn't give me too much trouble.

S x

Introducing Methotrexate....

I just got back from an amazing holiday in the Philippines and my skin behaved perfectly. I'm always suprised just how well my skin responds to being in the sea and the sun every single day. It LOVES the salt.
Here are some pics of me whilst on holiday!

Unfortunately, and typically, as soon as I got home my skin has gone crazy again :(

I had my 2 monthly derm appointment yesterday, thought I would update my blog seeing as I usually forget !

The derm now wants me to introduce methotrexate with the hopes of phasing out the cyclo. I'm all for this, I've heard great things about MTX, and the thought of only having to take pills once a week rather than two or three times a day totally appeals to me.

So I currently take 300mg of cyclo a day, the derm wants to keep me on this dose. Except for the days that I take my 10mg of methotrexate; he wants me to take 150mg of cyclo on this day. I also have to take folic acid once a day every day except for the days I take the MTX. It's a complicated system and I had to make notes in my derm appointment to keep up. The language barrier also didn't help! I'll admit I'm super scared about changing because the thought of halfing my dose (even for one day a week) is scary as my skin goes CRAZY when it doesn't get its cyclo. But I'm optimistic!

I will definitely be updating here as I go.
Here's my drug schedule in detail for anyone that's curious and would like to compare their own. I've included all the pills I take (probiotics, vitamins etc). I still need to check the dose of my folic acid so i'll add that in later.

If you have any experience of crossing over from cyclo to MTX I would love to hear from you!

S x

2 years!

Today marks 2 years since I quit topical steroids. 10 March will be 2 years off all steroids as I didn't finish my round of orals until 10th March 2014, or something like that.

I can't BELIEVE it's been 2 years since I started this crazy journey. So much has happened in that time - I moved continent, started a new profession, entered into a relationship, lost a loved one...yet still my skin is stagnant, haha, it hardly seems believable!

Anyway things are okay. Not much to update, still on cyclosporine and skin still acts out if I try to reduce. I have plans to reduce after my holidays finish at the end of Feb so I'll be sure to update then.

Even though it's been an impossibly difficult journey that has felt like I've been fumbling around in the dark for 2 whole years, I don't regret a thing. TSW has changed me as a person, it has opened my mind and taught me to never take things for granted. It is without a doubt the best thing I have ever done but I am SO ready for it to be over! Argh!

Until next time skin friends x

PS - I just noticed that for some reason half of my pics on this blog no longer work! Grrr. Hopefully I can update soon

LDN Week 2 Update

So as promised here is my week 2 update on LDN. Nothing much to report, I am still taking a 1mg dose at 9pm. I have noticed that if I take it any later than 9pm I really struggle to sleep so if I am to stick with night time dosing this time is obviously best.

Skin on my body has remained stagnant but I have seen a lot of improvement in my face.

The rest of my body is...meh. Still itchy and sore in my 'bad' places. Hoping to see some changes when I up my dose to 1.5mg tonight :)

More updates to follow :)

S x

19 months/17 months update and a rant

(19 months off topicals, 17 off all steroids)

So, probably because I'm struggling much more at the minute than I have been, I've decided to post another update.

I went on holiday to Japan, it was amazing! I did have some skin troubles though :(
But I thought I would post some pictures of my skin, along with some pics of my holiday because why not!

So before I left I was just coming out of a flare and while I was there my skin was GREAT. really smooth. However the heat made me very sticky and I think that's the reason I'm back in another flare now :( I'm trying to remain positive.

Here are some pictures!

I somehow manage to not look like im trying to tear my skin from my limbs. Fancy that!

Anyway here are some skin pics, flaring now.

^this is the general texture of my skin. its horrible. bumpy, oozy, sticky. ugh :(


I'm feeling very emotional, not wanting to leave the house, feeling desperate. I just struggle to see the end sometimes. I know it will come (or at least I hope). It's just so hard to carry  on with no guidance. I think that is the hardest part for me. I just want to be able to go to the Dr, explain my situation and trust that they will do the right thing for me. But I can't do that. The Dr doesn't have my best interests at heart and that is hurtful and makes me feel hopeless.

Dr Rap has been posting on the facebook group a lot and has created a blog which is infinitely reassuring. I just wish there was a Dr Rap in every country, infinite Dr Raps!!

Nowadays I think the only use in going to most Doctors is if you have researched your condition, you know what drugs you need and you just have to go to the Dr to get the script filled. I'm sure most people can relate to that. How stupid is that?

I recently saw someone post this sign they had seen at their doctors..

Maybe I'm feeling particularly emotional lately but I can't put into words how angry that makes me. I cant tell if its a 'joke' or not but even so...we as patients are now going to be punished for taking our health into our own hands? There is a reason so many of us 'self diagnose' and that is because our doctors are not doing it for us! Despite the fact that that is their job. Despite the fact that they should listen to our needs and not just mindlessly write us a script. We are not all the same. We are all different, we have different needs and we should be treated as patients, not customers.

I know I shouldnt get so angry but when I constantly walk around in a skin that feels 2 sizes too small for me, shedding skin everywhere, having anxiety attacks when I get even the slightest bit sweaty, it is very difficult not to blame the people who did this to me and to so many others.

Hmph :(

Anyway that's all for now. Hopefully I will see some relief soon :( x

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

ITSAN Forum Anniversary!

Very soon, the ITSAN forum will be 1 year old, that's almost a year of the most helpful and life changing advice available on the internet for skin sufferers.

Here's a link to a beautifully written blog post by inspirational TSW veteran Louise (CLICK) who has put it much better than I could!

If you're new to TSW or haven't had chance to look at the ITSAN website or forum just yet please take the time to do so today! It really is a wealth of information and it has changed mine and many others' lives for the better.

Skin update coming soon,

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!