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 :)

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

1 year

(and a bit! - i meant to post this over a week ago, oops!)

So January 10 2015 marked 1 YEAR OFF TOPICAL STEROID CREAMS!
I know..I can't believe it either. I know it gets said a lot but when I started this journey, I read blog posts like this one SO enviously, I just couldnt imagine getting here, but I'm so glad I did and I don't regret any of it.
There isn't really much to report photo wise, my skin has been near-perfect for months, I actually just started to get a little flare on my worst bits (my torso and neck) but it's been nothing like what it used to. I am still on ciclosporin though so I guess we can see how it goes once I aren't anymore.
It's also worth noting that I've only been off ALL steroids for 10 months (I was on a 2 month course of pred after 1 week of TSW) so maybe that's why I haven't had my dreaded anniversary flare yet.
I've been SO terrible at updating this blog, but to be honest you can just take that as a testiment of how well I have been doing, it's nice to not obsess over facebook groups and blogs, life is normal and pretty great :)

So for those of you still fighting the good fight, I hope you're pushing on - can I call myself a vet yet?! Haha. And those of you just starting out...PLEASE don't be discouraged by this post, by the length of time it takes because it does get easier, and time just flies!

Lots of love, and thank you to every single person that's been there for me in the past year, it's been difficult but so so worth it :)
S x

The light peaks through...

Just something I came across today that I wanted to share, I think this is so beautiful

I'm thankful that the light is peaking in through the darkness for me skin-wise right now. I hope a lot of you can say the same x

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

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