I did not think I would ever be able to make this post! I've successfully tapered so so so slowly from 20mg of MTX per week down to 5mg per week. That's 8 pills down to 2! I'm so happy and excited with how things are going. I can realistically hope to be off my MTX in the next couple of months if I follow the slow slow taper I've been doing so far. I'm almost there and I can see the finish line. My skin is fantastic and I can't believe it. I thought coming off MTX would be so hard but so far its been a breeze (I dont want to jinx myself eeek!). But slowly slowly slowly has been key. I'm posting this very close to my 4 year anniversary. What a journey. Just 2 little pills per week to lose and I can officially say I am med free. I'm so excited about my progress and wanted to share! I hope it can serve as an inspiration for those who worry about coming off immunosuppressants. Slow and steady wins the race!
I will be doing a picture update soon. I hope everyone in my lovely TSW family are doing well and are keeping the finish line in sight.
<3
Showing posts with label ITSAN. Show all posts
Showing posts with label ITSAN. Show all posts
Saturday, 3 February 2018
Sunday, 29 October 2017
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
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
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.
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!
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
Here are some pics of me whilst on holiday!
Unfortunately, and typically, as soon as I got home my skin has gone crazy again :(
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
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
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...
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
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.
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 :)
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 :)
Wednesday, 5 August 2015
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
^^^ 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
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
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
Sunday, 18 January 2015
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
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
Thursday, 9 October 2014
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
BREAK! :)
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
Monday, 25 August 2014
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
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
Thursday, 7 August 2014
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:
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:
If anyone fancies releasing their inner warrior here's how:
Keep on keeping on warriors x
Monday, 28 July 2014
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
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
Thursday, 17 July 2014
Day 188 photo update
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
Wednesday, 16 July 2014
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!
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!
Wednesday, 26 March 2014
Feelin' Purple
So today I post this song because it's appropriate (and also because it's great!)...I'm definitely feeling (and looking) kinda purple!
I'll post some photos for you here but the colour really doesn't show..I'm a lovely shade of violet really I am!
I'm flaring now, I'm sure of it. All the joint areas are suffering a bit, like insides of my elbows and my wrists are particularly sore, but I'm..ready for it...2 weeks steroid free! and 75 days topical steroid free. I'm also well into MW now too, I can't remember how far, i think 3 weeks or a month?
Oh and I've got a bit of sexy elephant skin going on on my hands now too...here's the photos
Anyway even though it looks and feels bad today I know this is a cycle and I trust the process so I'm keeping a sense of humour and positivity about me.
How's everyone doing?
S x
Wednesday, 12 March 2014
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
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
Thursday, 20 February 2014
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
Monday, 17 February 2014
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
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
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