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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

Tuesday, 5 April 2016

Guest Post - TSW - Some tips from a survivor

Melissa Hawira is a health writer and founder of Top Eczema Treatments (http://topeczematreatments.com), a website dedicated to helping people overcome eczema naturally.

Hi Guys, 

My name is Mel and I want to firstly send a big thank you to Sarah for allowing me to write for her blog, but more importantly for creating this blog in the first place.

Like Sarah, I decided to undertake Topical Steroid Withdrawal and found the greatest weapon that I had during the worst of it was the ability to connect with others going through the same issues and being able to read their blogs and relate to their stories. There’s a lot to be said for the opportunities which the internet and social media provide us during times of need.
As of today I’m in month 16 of TSW and am feeling fantastic, but that was following a great deal of suffering, patience, persistence, sacrifice, and trial and error on my behalf.

I learnt so much during this time but I wanted to quickly touch on a few of the important lessons I learnt.

1. Diet, diet diet!

For me, and in fact many people with inflammatory issues, the severity of my symptoms were often linked to the health of my digestive system. I noticed a direct connection with what was going into my gut vs. what was happening to my skin and although this is not the case for everyone, it certainly was for me.

Finding the offending foods meant I could manage my symptoms better and give myself the best support for my body while it suffered the worst times, and help rebuild healthier cells and a healthier ‘future me’. 

2. Vitamin D3/Sunlight

Vitamin D3 otherwise known as 'get some sun' was not a magic bullet, but it was certainly an important tool in my TSW fighting tool kit.

I thought this was an important topic to cover in detail also because I found lots of people were naturally gravitating towards sunlight, so it was worth investigating. 

Turns out there are loads of people who notice their skin symptoms improve when they get some rays – so I researched, wrote an article and created a little video titled 'Does tanning help eczema?' (topeczematreatments.com/does-tanning-help-eczema)

3. Sleep

For me, losing sleep during TSW was as painful as any of the oozing and bleeding. Without sleep, the body will not be able to heal as efficiently, while insomnia can cause a whole world of stress and psychological issues of its own.

Insomnia happens for a few reasons during TSW, so it was important for me to support my adrenal glands with correct diet, support my comfort levels by (at this stage) not using any moisturisers or bathing, try to stay off computers or TVs before bed to support the natural circadian rhythm, and find a good quality valerian supplement to temporarily help me relax.

This is a complex and traumatic process the body goes through so for those of you just starting out, please be kind to yourselves and give your body the time and care it needs to reach its full healthy potential.

Thanks for reading and I wish you the best on your TSW journey.

Mel x

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