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

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

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

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

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

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 :)

TSW Month 7, Photo Update

(9 months off Topical Steroids, 7 months off all steroids)

So I thought it was about time I finally posted a photo update! I got back from holiday in July and showed you all how great my skin was thanks to some sea and sunshine - unfortunately what followed that was my longest flare to date. I'll post the photos of my flare and then I'll post the photos I took today. Most of the worst photos from the flare were taken around 2 weeks ago. I finally started to get a break a few days ago and I am REALLY enjoying it :)

Since my flares are MAINLY localised on my upper body thats what I've included photos of. My legs have been mostly clear since around week 6 TSW (I'm going to include a comparison of this at the end too) My arms didnt look too different to be hoenst during this time it was mostly my back and torso that i suffered with.

Less chat, more photos!

During the flare

Its kind of annoying that the camera can't seem to capture just how much PAIN and discomfort I was in. The skin was so raw and sticky, I could hardly get dressed in the morning.

BREAK! :)

Comparisons

So there we go! Super happy with my healing at the minute, that was one of the worst flares I've suffered and it really got me down. 

Also my legs are literally so smooth right now, theyve been clear for a while now but they are literally perfect at the moment. Here's a comparison of before I started TSW and now:

Healing happens. I know it seems crazy and unlikely and horrible but we just have to stay strong and keep smiling.

Lots of love.

S x

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

Warrior

I've been really getting into yoga lately. My skin is okay, it stings a lot when I sweat but I feel like the exercise is good for me. Yoga's particularly good because it's not too strenuous, the Sun Salutations mean my heart gets racing but it's not too excessive to make me feel like I'm gonna pass out!

It also helps that I've joined a lovely yoga school called White Wolf Yoga which is based in a great venue just on the outskirts of the city that has a rooftop terrace. Yoga on the roof with a cityscape sunset setting, I can't argue with that!

Anyway, I don't know how many of you are familiar with yoga but I'm sure you'll have heard of the Warrior Pose:

It's a great pose and I always spare a thought for all the TSW warriors whenever I take it. I know I've talked about this before but I really can't put across enough how amazing everyone in the community is, we're such a strong, supportive group and I'm proud of us all!

If anyone fancies releasing their inner warrior here's how:

 Keep on keeping on warriors x

Allopath...

A great little video, credit to Corinna Lee from one of the great TSW Facebook groups I'm a member of.
Sums up the medical community brilliantly I feel!

Day 188 photo update

As promised here's a photo update! My skin is doing so well now, couldn't be happier, so smooth. I look a bit weird, keep stroking my skin in public!

Here are some before and after photos, most of the before photos were taken around 3 weeks ago. It's worth noting that I'm still on ciclo, but I was when I had these flares too so I think there must be some natural healing going on too!

(Bottom left taken today)

(Bumps on the left, couldn't even see my tattoo my skin was so bumpy and elephant-like! Right is today)

(My neck and décolletage are two of my biggest problems,  they're so smooth right now! Right was taken today)

So yeah I'm super happy with the way things are going. I have a derm appointment a week on Monday and I'm going to discuss reducing my ciclo-finally! My flare 3 weeks ago was one of my worst but it was worth it, as it always is.

I hope everyone's doing well, it's so hard to push through sometimes when you feel like you'll be in a flare forever but I've got faith that we will heal, keep on keeping on :) x

The Home Apothecary

So thought I would make a post to say that i have FINALLY made my first order from the cutest little store The Home Apothecary.

I've been in touch with the store owner - who is the sweetest by the way! - since near the beginning of my journey with TSW and have wanted to order for so long, and I finally made my first order today. For those of you who aren't familiar with The Home Apothecary and her beautiful son Isaiah's TSW journey please do have a little look through their blog - Isaiah Quinn

I've ordered the Lemongrass, Grass Fed Tallow and Boo Boo balms, heard amazing things about these handmade totally natural products and I'm super excited for them to arrive. My skin has been doing really really well at the minute, some lovely smooth areas and just a few stubborn areas I want to work on and I think the balms will be perfect for that. I have these weird little bumpy bits that I believe are common in TSW that I really want to get rid of before I get another crazy flare and I've heard the lemongrass can be great for this as well as helping to fight staph infections.

I'll keep everyone updated and if you have a chance go check out The Home Apothecary's store, particularly if you live in the US, I live in the UK so I'm off to harass my postman.

Happy healing everyone x

ps, i plan on doing a photo update in the next few days!

Flaring....?

I think I may be flaring...
Lots itchier than normal, skin is really dry again and sore to touch, a few lint wounds and a bit of oozing too. not fun :(

I hate flaring for a few reasons..
1) It makes me wonder if the ciclo is even working, and if isn't then i'm putting my body at risk of other things such as skin cancer and liver disease/kidney problems for no reason.
2) If the ciclo is working and these are just mini flares that are being dampened by ciclo...how much would I be sufferng if I weren't on ciclo?! and how badly will I suffer when I have to reduce and eventually stop ciclo? I actually skipped a dose by mistake a few days ago so maybe this is the result, but i thought it took a while for the ciclo to actually affect the system so I'm not sure.
3) I still have that classic eczema mentality that somehow a flare or bad skin is my fault. "If i could just keep my nails short", "If i could just stop scratching" etc etc etc. For so many years doctors have drummed it into me "YOU MUST NOT SCRATCH" that in my head scratching is the problem. In my head I don't actually even HAVE an underlying problem i just need to STOP SCRATCHING. This was the best thing about starting TSW for me, I started to realise that there are some things that are out of control, my skin will flare and break just the same if I scratch or if i dont - within reason! obviously scratching can damage the skin and slow down healing but whether I scratch or not I still have tsw, it's out of my control. That's a really liberating feeling

Anyway hopefully this will pass. I have a derm appointment on 1st June and I'm terrified he will want to reduce my ciclo :( I'm enjoying having quite good skin and I don't want that to change before my holiday on 1st July!!

Hope everyone is well
S x

"Hypochondriac"

Ok so just checked the post and I have a letter from yesterday that was a copy of one my derm has sent to my gp. Now, luckily I'm the sort of person who laughs about things rather than cries about them as this is one of the sentences in the letter:

"Sarah has severe atopic chronic eczema that requires the use of steroids, possibly indefinitely. However Sarah refuses to admit this and wil not use steroids. Sarah actively refuses treatment which leads me to believe there may be some form of hypochondria involved"

HA! I'm literally all out of words. Sometimes I think my derm just likes to be a dick on purpose 😡

Anyway, I'm off to enjoy what's left of my weekend, hope you all do the same

S x

When it doesn't feel right, go left

How amazing is is that I came across this image on Instagram the day I had a blazing argument with yet another derm...

So yesterday I went to get a check up, because I'm on ciclo I have to go get my bloods taken and blood pressure checked every 3 weeks. My skin isn't in good shape right now, it's been worse but it's definitely also been better. So my derm asks me have I been using my steroid cream? (He prescribed me elocon a few weeks ago but I never picked up the prescription) I considered lying but to be honest I was just in one of those moods where I didn't feel like going along with his bullshit. So I told him that no, I hadn't. I was expecting a negative response but nothing even close to what I got. He basically told me I was stupid and naive, did I think I knew more than a medical professional? I answered that I knew my body more, it's my body, and I told him that, unlike him, I aren't encouraged or sponsored by pharmaceutical companies. It all got pretty heated and resulted in me storming out, albeit it with a prescription for more ciclo and atarax (thank god)

So, like the title says, this post is about going left when you feel like it's not right. It's so so hard to not listen to your doctor, your derm, your mum, your friends and to listen to your body instead. But I know this is right. And I can't wait to book an appointment with that derm when I'm healed, i'll be sure to take a photo of his face and post it here!

Hope you're all doing well and you have a better derm than I do

Love, S x

Fed up

Writing this from my desk because I'm miserable and distracted at work. So I already mentioned that I'm flaring but instead of improving with daily DSS and ACV baths it just seems to be getting worse :( it's nowhere near as bad as it was before I went into hospital but I'm just so angry and frustrated that my skin should still be this bad when I'm still on prednisalone and ciclosporin :( 

Even my face/cheeks are rashy and swollen which is something new. No amount of antihistamines will make the swelling go down so I look like I've been in a fight currently. I'm just feeling down and fed up because I haven't even started my journey properly this time around yet and I'm already sick and tired of feeling uncomfortable in my own skin 

Moan moan moan

Flaring

Little update about where I'm at right now

So I finished my second course of antibiotics and, as I predicted, I'm flaring again, but nowhere near as bad as in week 1 of withdrawal as I'm still on 20mg of pred a day (still reducing by 5mg every 5 days)
A few people have told me that flaring is normal while reducing pred and also that antibiotics contain anti inflammatory properties so it's normal to flare when coming off those too, which is all good to hear, I was really worried about my flare happening while I'm still on oral steroids, made me scared of what it will be like when I stop completely. And also the fact that I'm on ciclo, i thought this would prevent flares from happening, but then I suppose it is nowhere near how it could be so I'm grateful for that.

As for myself I'm still doing pretty well, nowhere near emotionally/physically drained as I was when I first quit everything, so the meds must be helping. If my skin stays this way throughout the whole of my withdrawal I'll be pretty happy (i know this is unlikely!), it's far from perfect but it's totally bearable.

I bought some dead sea bath salts last week as well as some apple cider vinegar which lots fellow tswers have been raving about and when I took a bath when I first flared I noticed I was a LOT less red and itchy afterwards, just more dry which again, I can cope with.

So overall I'd say I'm about a 7/10 today, which is a definite improvement from the -1 i felt when I first withdrew.

I'd be interested to know people's stories regarding antibiotics/oral steroids/immunosuppresants and their flare patterns, maybe I can work out how long I can expect to flare, although I know everybody is different.

Hope everyone is doing well and staying positive, I know I say it all the time but I'm really grateful for all the love and support everyone provides me and other sufferers with!

All the love in the world
S x

Photos

These photos were taken on DAY 2 of my steroid withdrawal, the skin was just starting to get red and itchy but I don't think the steroids had really worked their way out of my system yet. Still, I don't look great.. Here we go...

 Mainly still patches of eczema on my arm here, not really any major signs of redness/swelling/peeling

Face & chest are very dry, not really justified in the photos! 

Feet & legs totally covered in eczema but again, not really TSWified just yet, no real redness or swelling, just ugly old eczema!

Here's a photo I took today of my upper arm, it's the only one I took I really don't feel up to taking more and its usally dark once I'm home from work. But you can really see the way the withdrawals have started from this photo:

Angry, red, flaky, discoloured skin :( 

It's making me so miserable.

I know it's going to get a lot worse before it gets better and this is the hard part for me. But, my steroid creams are in the bin and I won't be fishing them out. So here's to a long, but worthy journey.

S x