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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

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

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

FRO-02881-4.jpg (1600×1600)
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

himalayan-pink-salt.jpg (1000×669)

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...

clay.jpg (300×300)

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.
412ZaB-+ntL._SY300_.jpg (80×300)

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

Monday, 24 August 2015

LDN 1 week update

Started LDN 1 week ago today, *yay*. I actually upped my dose after the first night after doing some reading around about LDN. For most, 1mg is actually still considered a very low dose and as I had had no trouble with the 0.5mg my first night I decided to throw caution to the wind and took 1mg from then on.

My plan is to stay here at 1mg nightly for another week, then go up to 1.5mg nightly. 1 week is really no time at all in terms of seeing effects so there isnt too much to report.

Here's what I have noticed...

  • Vivid dreams - a very common one among LDN users, and I don't want to use the word 'side effect' because I don't really see this as a bad thing. Theyre not nightmares, just very vivid dreams. Dreams in technicolour that start the minute I drift off to sleep and stop the second I open my eyes. I actually quite like this! I used to lucid dream a lot but haven't been able to do so in the past year or so this is a very welcome change.
  • Sleep changes - I really don't want to attribute this to LDN because my sleep has always been very messed up. It takes me a while to drift off to sleep and when I do I usually wake up every 2 or 3 hours. This is the same now on LDN. So I don't think it is the LDN causing my sleep problems, they exist anyway. However what I have noticed is that even though I aren't getting much sleep, I feel much more rested than I usually would. The amount of sleep I'm getting has not changed but I feel as though the quality of my sleep has.
  • Skin - again, I don't want to say what is happening with my skin has anything at all to do with LDN because I don't think I've given it enough time and I don't think my dose is high enough yet to make any real difference. 

What I will say is that for the past couple of weeks I have been in a really horrific flare. Almost as bad as the beginning, which is very disheartening considering I am still taking 200mg of ciclosporin daily. I am coming out the other side of the flare now, thankfully. I will post some pictures later this week, I'm hoping this break lasts long enough that I can get some nice ones to compare to the horrible ones.  It has been really difficult. Crying in the shower, scratch fests in the toilets at work, the lot. Horrible :(

I think, as usual, what started to turn things around was swimming in the sea on Saturday. I use the word 'swimming' loosely as what it basically involved was me getting into the water, neck-deep and holding my boyfriend's hand whilst i cried and (inwardly) screamed in pain (i was polite enough not to scream out loud for fear the coastguard would come and take me away). Anyway the pain was worth it because the very same day I  started to feel much better.

Then, yesterday I took a shower and applied Cerave cream as a bodywash in the shower. I can't really use moisturiser when my skin is dry but it can tolerate it pretty well when it is wet.

A couple of things I ordered online arrived today which are going to be super helpful for me too...
I ordered a huge pink plastic tub that I can bathe in, not having a bath was killing me! Especially when it gets too cold to swim in the sea. I also ordered more probiotics, benotite clay, coconut oil and dead sea salt! So I'm all stocked up.

Anyway, sorry for the essay! Seemed I had a lot I wanted to get down once I started writing. I'll update with some photos this week and then again next week for a Week 2 LDN update

Happy healing!
S x

Tuesday, 18 August 2015

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 :)