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

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

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

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

Rock, Taper, Scissors

So the day is finally here..I'm starting to taper off ciclosporine!
It's really scary but really exciting. The derm was a bit reluctant as I still have some signs of stubborn eczema and my bloods are great with no sign of any crazy side effects or anything. But I want to start making the change while I can. I'd much rather start to taper slowly while I'm in a good position to do so than have to stop abruptly for whatever reason. I've been on ciclo for 6 months now and on my maximum dose for 4 of those months which is enough.
I've reduced from 300mg daily to 250mg daily - not a huge jump but just the fact I am starting to taper makes me happy :)
Hopefully I won't see too many crazy flares and I can continue tapering. I want to be totally off ciclo within the year if possible.

In other news my package from the Home Apothecary arrived today (see my second-to-previous post for more info) and I couldn't be more excited! The parcel itself just smelled amazing and I can't wait to have a long salt bath and cover myself in yummy smelling all-natural balm!

I guess today is one of the good days.
S x

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

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

Hello hair!

Hi all!
Just a quick one and a warning that if I bump into you on the street, I am not actually currently transitioning into the American werewolf in London (or the British werewolf in...Britain), it is in fact apparently just a side effect from the ciclosporine (I hope, maybe stay away from me during future full moons, just in case)

I actually had to TRIM my arm hair today, with SCISSORS! I also have lovely attractive long blonde furry sideburns 8) maybe I'll start a trend? The hair on my head is thicker too but not in a good way, it's really wiry and uncontrollable. I've asked around though and apparently this is common & it should settle down in a few months.

If it doesn't maybe I'll just start auditioning for a walk-on part in the next Twighlight film or something.

Here's a delightful photo of my caterpillar arm pre-trim



S x

Pred free, baby!

Here's me enjoying an oriental dress that i found in a vintage shop, it's absolutely gorgeous but i have nowhere to wear it yet so i'm just wearing it in my bedroom (not a forest, looks can be deceiving!!)

anyway the reason i post this pic is because my skin hasn't really changed since the last photo update so rather than bore you with pictures of my limbs i thought i'd post one of my face for a change!

Today is the day to celebrate anyway, I took my last 2.5mg dose of prednisalone yesterday,FINALLY! it feels like i've been tapering since forever so i'm really happy that i can FINALLY say I'm steroid free.

So my TSW OFFICIALLY STARTS HERE although I'm already 8 weeks off topicals (yay)

My skin is really really good at the moment, thanks to a fab combination of ciclosporine and no moisturiser, let's hope nothing changes!
Happy healing lovebugs x