It’s been a tough 3 weeks, but I haven’t given up! It’s the furthest I’ve ever gone trying to taper my steroids down below 7mg, and that in itself is an achievement!
I knew tapering down my Prednisolone was never going to be an easy ride! I knew I would be spending long days battling fatigue and weakness. I struggle to do a lot at the moment, I easily get exhausted, but I know it’s all only temporary!
For anyone who’s new to my blogs, I’m currently attempting to taper down my Prednisolone from 7mg to 5mg, by 0.5mg every 4 weeks, after being on 7mg or higher for around 10 years.
The Wolf Isn’t Happy!
On top of the normal withdrawal symptoms, the wolf has become unhappy. I had hoped this wouldn’t happen! I’m suffering from quite a lot of pain in my joints. I had hoped that the higher dose of methotrexate would prevent this. But then again, I’m not quite yet on my maximum dose of 25mg, and I’ve only had two weeks’ worth of the 20mg!
I know with Methotrexate it can take a few weeks before it starts working fully. And maybe it is helping in some kind of way! I remember back in February when I attempted tapering, on day 15, I went downhill. I felt that poorly, I had to stop the tapering. I remember feeling heartbroken, like I had failed myself!
This time, despite things flaring with the wolf, it’s nowhere near as bad as it was in February. This time, I feel like I can do it, I can ride out the bad days, and hopefully soon, I will get to the good days!
In Other News
I had my bloods done last week by a different phlebotomist, as mine was on holiday. Oh, what a nightmare it was! For some reason, it’s only my phlebotomist who can seem to get blood out of me on the first attempt. Everyone else seems to really struggle! Honestly, I dread it when she tells me she’s on holiday when my bloods are due!
Thankfully, four attempts later, we managed to get blood and fill up one test tube and a quarter of another!
A Bit Of Good News
Good news, my liver ALT readings have come down, and my specialist nurse was right. It was my Iloprost infusions which caused them to rise! Honestly, it was a big reflief to see this! I was so worried it was my Methotrexate!
All being well, if my bloods come back good next week, my dose of Methotrexate will get upped to 25mg, my maximum dose. A dose I’ve never been able to get onto before, because of my liver.
Honestly, I don’t know how my body will respond! I’m excited but also anxious. I’ve never been on this dose before! Hopefully, I won’t get too many side effects, if any. It’s a dose that could make a great difference to my quality of life! It could be the dose that will give my body the strength to be able to climb mountains and run once again! Things, I love and miss sooo much!
Finally Faced My Fear!
You may think this is completely crazy! I’ve now been self-injecting for 7 plus years. The whole journey, I’ve had this fear of injecting into my belly. Why, I do not know!
Injecting in my thighs wasn’t a problem until recently, when my Belimumab injection was introduced. Since injecting twice a week, I’ve been getting a lot of rashes, sore skin, and bruises. Not sure if it’s more my Belimumab causing this? Or it’s the fact that my injection areas aren’t having enough time to fully heal before I inject again? Despite trying to rotate as much as I can each time!
So now it’s left me with no choice but to start moving over to my belly!
My Hand Just Froze!
In first few weeks, I tried injecting in my stomach, my hand just froze. I just couldn’t do it!
But last week, I got the coverage and I finally did it!!!
Honestly, so happy! I’ve only found the courage to inject my Methotrexate into my belly, as that one doesn’t hurt. It’s going to take a lot more courage before I try my Belimumab, as that one stings a lot! But my plan moving forward, is to inject my Methotrexate into my belly and my Belimumab into my thighs. That way, each injection spot is going to get a 2-week recovery in between, if that makes any sense.
Anyways, that’s it from me this week! Next time we speak, hopefully, all being well, I will have dropped my steroids down again, from 6.5mg to 6mg. On top of that, I will hopefully had the full go-ahead to move up to my 25mg dose of Methotrexate.
Until next time,
Goodbye for now
Emma
xox
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Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
