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Sunday, 11 March 2018

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

Saturday, 3 February 2018

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.


Sunday, 29 October 2017

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

Thursday, 16 February 2017

Goodbye Korea, Hello Vietnam! - an update

Just a quick note to say that I'm in Vietnam and doing really well on methotrexate. I successfully tapered off cyclosporine and I hit my 3 year TSW anniversary not so long ago!

Healing is definitely happening, and I just started reducing my methotrexate so I will try to update if/when things change.

The main point of this post was to put my email address here, in case anyone wants to contact me. I do get comments on old blog posts and I'm terrible at checking for them. I hate to miss messages as keeping in contact with TSW bloggers really got me through in the beginning.

So, if you want to contact me please drop me an email. I'm always happy to chat.

My email address is sarahecg@gmail.com

Happy healing,

S x

Wednesday, 29 June 2016

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

Monday, 29 February 2016

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

Friday, 5 February 2016

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

Monday, 11 January 2016

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

Monday, 31 August 2015

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

Friday, 28 August 2015

Bath Time & TSW

I've mentioned before that in April I moved to South Korea to teach English. As part of my contract, I got a free apartment, which is great! Unfortunately there is no bathtub. So I purchased this big pink tub so I can still have baths

 I had my first dead sea salt bath in 4 months last night, it was amazing!

So in honour of my lovely new princess tub I thought I would do a post on bathing, what works for me, and what I've seen work for others.

Throughout this withdrawal process, bathing has been my saving grace. It's the one place (apart from the sea) that I can feel totally relaxed and itch-free. Some people going through withdrawal spend most of their life in the bath in the early days, even sleeping in the tub sometimes because it's the only place they can get some relief.

There are many different kinds of soothing baths that you can take and I thought I would outline some of the main ones that I've come across and provide some help. Just click on any of the brands and you should be redirected to the websites. Starting with my personal favourite...

Dead Sea Salt

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I could not go a week without these! I love swimming in the sea, it is one of the only things that can really turn my skin around in a flare and this is the next best thing. There are lots of blogs that can inform you about bathing in dead sea but personally, i use about 1 cup of salt per bath, depending how bad my skin is i may use less/more (worse = more, better = less). I run the bath quite hot and put the salt in while it runs. Then, I leave the bath to cool down and hop in! Most people recommend a tepid bath but I have no problems with a hotter bath so that's what I do.

 Some people like to add bicarbonate of soda to the tub to prevent stinging and this really does work. But personally, I feel the stinging eliminates the itch so I actually prefer it. If you have little ones I would recommend adding the soda so it doesn't sting, it's hard for them to understand that it is for the best sometimes! 
I usually soak for about 20 minutes, which is the recommended time for the minerals to really soak into your skin and work their magic. I've actually taken to watching an episode of the simpsons on my laptop (perched safely on a chair across the other side of the room of course!) because they are 23 minutes long and pass the time well! 

Dead Sea Salt links...
Epsom Salt

Brands I've used: Westlab, Boots
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I usually only take an Epsom bath if I'm out of dead sea salts as they are generally more readily available. I follow a similar structure to the one above, only I will add less epsom than I usually would DSS (Dead Sea Salt) because it tends to sting me a little more. EVERYONE is different but for me Epsom doesnt sting as much but creates a kind of tight feeling on my skin which isn't my favourite. BUT it does do the trick and softens my skin up nicely.

Epsom links...

Pink Himalayan Salt

Brands I've used: Westlab, Frontier

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A lot of people love pink himalayan and I do too! I find it very similar to Dead Sea Salt, the only difference being that I find DSS leaves my skin ever so slightly softer. Again, I follow the same process as the DSS baths, using the same amount of salt. I don't find this stings as much as DSS but, like I mentioned, I do actually like the sting in terms of the way it eliminates itch for me.

Pink Himalayan links...

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I took my first bentonite clay bath yesterday and boy did it feel good :) Things can get a little messy and there are more things to keep in mind than with a sea salt bath but it is worth it.
For a clay bath, I use about 1 cup of clay for a normal sized bath. Many people use more, but I don't like to use too much because it's expensive and I find that 1 cup usually works fine for me. Experiment! There aren't really any set rules for how much you can use.
Instead of just putting the powder into the tub, I mix the amount of clay I'm going to use first with water in a plastic bowl and then mix this wet clay into the water, I find it dissolves much better.

Then I get in the tub and relax for about 30 minutes with this one, to really give it chance to detox me! I spread the water over my body but I'm always careful to keep the clay wet when it's on me, I don't like it when it dries on sensitive skin. I use George's Aloe Vera Spray to keep the clay on my body wet.
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Once I've soaked, I rinse off in the shower and then empty the tub, making sure to catch any clumps of clay so they don't block the drain.
And that's it!

Bentonite clay links...

& that's it for all the baths I have tried. I know a lot of people also have a lot of sucess with BLEACH BATHS and ESSENTIAL OIL BATHS (click the links for more info). Phew! I love my tub :) If you've got any more ideas for some great TSW baths please let me know, I'm always happy to spend more time in the bath ;)

Photos coming soon and an LDN 2 week update on Monday

Happy healing 
S x