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
Showing posts with label tsa. Show all posts
Showing posts with label tsa. Show all posts
Sunday, 29 October 2017
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
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
Saturday, 19 July 2014
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!
Sums up the medical community brilliantly I feel!
Monday, 31 March 2014
Day 78/Day 19
78 days off TS, 19 off all steroids (inc. orals)
(/end of edit 03/04)
Left arm 26/03, 27/03, 31/03
Just a photo update today. Flared up a bit last week and it's healed nicely, I'm having a little mini break (still v dry and nowhere near 100% but much more bearable).. they never last more than a few days but those are the best few days.
Wrist 26/03, 27/03, 31/03
EDIT: wrist 03/04 really happy with how it's healing :)
Even though I hate these flares I am encouraged by the fact that they pass really quickly, at the minute id say I'm passing through 1 cycle a week, which is pretty fast I think.
Can't wait to reach the 3 month mark
S x
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
Saturday, 22 March 2014
"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
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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