...And still doing brilliantly. In fact it feels like with each reduction my skin gets better and better. I feel fizzy with excitement! I don't want to jinx it by speaking too soon. This journey has been too long and, at times, disappointing to really get my hopes up. But I can see improvements every day and I'm down to just one little methotrexate pill per week!
I was browsing over my old pictures that I took right at the beginning of my journey, when I was still basically on steroids. I can't believe it's the same girl in those pictures - both physically and mentally.
Physically, I can't believe I lived for so long with skin so bad, and just accepted the non-committal and uncaring 'solutions' from ambivalent doctors. Yes, I've suffered a lot these past 4 years, but I took control and I look (and feel) so much better for it. I never thought I would have the skin I have now.
Like pretty much everyone, I was so scared of starting TSW, I think I went through all the stages of grief. Denial - surely this can't be happening to me? It seems so scary and so serious and I only ever did what the doctor told me to. Anger - god, the anger. I've never been so angry in my life than I used to be in the derm's office. I wanted to shake some sense into pretty much every doctor I saw. Bargaining - taking oral steroids that the doctors pushed on me after 1 week, just out of desperation for relief. Depression - obsessively scrolling through the facebook groups, reading every blog I could find, not leaving my room, cutting contact with people who weren't my TSW online friends, crying in the bath...you name it. BUT finally, acceptance. It took me a long time to fully accept and to shed the anger and depression - I don't think they ever really leave you but they sit on the back burner eventually. I've made my peace with TSW and I'm grateful for the life lessons it has taught me so far.
This is a pretty long and emotional post but I feel that (hopefully) coming to the end of something which has been so horrific, but at the same time so transforming, is worth the extra words.
I plan to post some pictures of my skin soon which I haven't done in a long time. I hope everyone is doing well and that this post gives you all some hope :)
I still receive emails from time to time from fellow TSW'ers and I'm always happy to help/chat, so if you feel like you need a TSW friend (mine have been so helpful!) just drop me an email at sarahecg@gmail.com
S x
Showing posts with label immunosuppressants. Show all posts
Showing posts with label immunosuppressants. Show all posts
Sunday, 11 March 2018
Saturday, 3 February 2018
5mg Methotrexate...
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
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
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, 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
Monday, 2 June 2014
From pharmacy to dustbin
Only one destination for this bad boy and that is the bin, total toxic rubbish!
Had a derm appointment and told him I'm happy with my progress on ciclo and he says he is happy too but why don't I try some of this too?! Couldn't be bothered to argue so here it is in my bag of Meds!
So glad to have people who know what they're talking about who I've met on this journey because I know not to use this nasty stuff
Good news is I have 2 more months at least on ciclo :) which means hopefully my skin won't be out of control for my holiday in Ibiza in 4 weeks!
Hope you're all well x
Monday, 19 May 2014
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
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
Saturday, 17 May 2014
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
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
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
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