I’m halfway through my four long months of steroid tapering! Honestly, I cannot believe it!
It hasn’t been an easy two months getting to this point, but for the first time, it feels achievable! Getting to my goal of 5mg of Prednisolone has felt more doable than ever before!
And I think it’s all thanks to my dose increases of my Methotrexate injections!
For anyone who doesn’t know, I started increasing my Methorexate back in May, when I was on 15mg. I’ve been increasing my dose every 4 weeks. I’m now on 25mg, which is my maximum dose.
It Hasn’t All Been Plain Sailing!
It hasn’t all been plain sailing getting to this point! Far from it!
At the end of my first taper, I went into a flare-up with the wolf. A flare-up that left me feeling extremely fatigued and in a lot of pain in my joints.
After 2 weeks of battling, things thankfully improved, with the help of pain relief. I am back on Etoricoxib, a pain relief I’ve been on once before. As much as I didn’t want to go back on Etoricoxib, mainly because of my kidneys, it has made a great difference.
Battling pain day in, day out in draining! You don’t realise how draining it is, until you actually get some relief from it.
I’m hoping that being on Etoricoxib is only going to be a temporary thing. My Methotrexate dose was increased to 25mg last week, my maximum dose. So hopefully, the more doses of 25mg I get into my system, my Lupus should slowly get more and more under control.
They say it can take anywhere from 3 to 6 weeks to start feeling the benefit, but 12 weeks to get the full benefit!
The Hardest Part
The hardest part of each stage of tapering I’ve found is the end of week two, going into week three. This is when the fatigue wipes me out. It’s the time when my adrenal glands haven’t quite yet kicked in to replace the missing cortisol. My body is feeling drained from running on low cortisol for what feels like days on end.
But then as I push through week three, I my fatigue starts to deminish, and by week four, I start feeling stronger. Just in time to drop my dose down again, and to go through the whole cycle once again!
It’s One Rollercoaster Of A Journey!
It’s a rollercoaster of a journey! How I’m staying so positive through all this I don’t know! I do have days when I feel like I can’t do this anymore, but then I have to remind myself how far I’ve come. How grateful I will be for persevering with it, in the months to come.
I started at 7mg, and I’m down to 6mg. Next week, I drop down to 5.5mg. My goal is 5mg. I’ve come too far to give up! I’ve just got to try and find little things that bring me happiness, to keep going, to keep pushing through the harder days.
Little Things That Have Helped
This past month, I’ve really got into reading. So on days I’m feeling too fatigued to do a lot, I bury my head into a good book. This takes my mind off how I’m feeling, but also keeps me occupied when I don’t have the energy to do anything else.
Spending time outside always boost my mood! On days I can, I try and get out for a little walk. I also spend a lot of time sitting outside, under my pergola. Either reading, or on my laptop, like I am now writing today’s blog.
I’ve also made very little plans for these few months of tapering. For me, there’s nothing worse than making plans, then having to cancel. Not only does it make me feel sad, but I feel guilty for letting whoever it is down. The very little plans I have made, I’ve tried to time it on week four of tapering or week one. These are my ‘better’ weeks of the tapering.
This book about a North Korean girl who escaped is well worth a read……..
Important Bloods
Next week’s bloods are important! It’s my first set of bloods were we will get a true reading on how my body is responding to my new dose of Methotrexate. I’ve never been on 25mg of Methotrexate before, so we don’t know how my body is going to respond. 20mg has always been my maximum dose. So I’m keeping my fingers and toes crossed for good results!
I still currently have to get my bloods done every fortnight. I think I need another 6 weeks of good blood results, then they can go to monthly. Honestly, cannot wait! My veins can’t too! We are literally using the same vein every fortnight, despite trying a different ones each time, and failing!
That’s it from me this week! Hopefully, next time we speak, I will have some good news about my bloods, and be well underway on stage 3 of my tapering.
Until next time,
Goodbye for now
Emma
xox
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My book, How I Tamed the Wolf, Living with Lupus is available on Amazon via this link:
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Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
