Hope you’re all having a great weekend!
I’ve had a busy few weeks, but it’s been lovely! Last weekend, we went away in the van to the coast, which was lovely. The weekend before, we were away celebrating my Grandma’s big 90th birthday with all the family.
I can’t believe it’s August next week! I swear, this summer is going way too fast! But it’s nice, we finally seem to get getting some summer weather at last!
Here’s some pics from last weekend:
Update on Belimumab
Things seem to be going well on my Belimumab. I’ve now had a total of 8 doses! They say it takes around 12 doses before you see full benefits. I’m technically now 2/3s of the way there. I can’t believe how quick the weeks are passing by!
I am still getting side effects, which is rather annoying! I inject myself on a night, just before bed to try and sleep through some of the side effects. But the day after, I’m still left feeling pretty rough! I’m hoping as time goes on, these side effects will dampen down. But if they don’t, I need to keep reminding myself, one day a week feeling pretty rubbish is worth it for the six good days!
I’m Down to 7mg
Tapering of steroids is going well! Eight weeks ago, I was on 10mg of Prednisolone. I’m now on 7mg! I know it may not sound like a lot, but in the steroid world, it is! Tapering steroids is hard! Very hard!!!
I started decreasing my steroids by 0.5mg, every 7 days. To start with, it was going well. In fact, really well! I found myself feeling quite fatigued on day two and three, but that was it! Then as I hit 8mg, I started suffering with a lot more steroid withdrawal symptoms. So, I slowed down my tapering.
Moving forward, I will continue to try and taper my steroids down. I will do it slowly, listening to my body, and only lowering it when I know my body is ready to do so. But I know it’s going to get hard!
From 10mg to 7mg, was the ‘easy’ part! I was 7mg this time last year, and had only increased my dose to 10mg back in October. So my body wasn’t too dependent on that dose. However, I haven’t managed to get below 7mg in my whole steroid journey and I’ve been on steroids for almost 10 years now! Scarily too long!
Aware of Adrenal Crisis
Because of how long I’ve been on 7mg, I am at risk of Adrenal Crisis. For anyone who doesn’t know, Prednisolone replaces the need for your adrenal glands to produce so much of the hormone cortisol, as it’s getting it artificially. When you reduce your Prednisolone, your adrenal glands have to learn to produce more cortisol again, to replace the missing amounts. Sometimes, after long-term steroid use, your adrenal glands don’t kick back in, leading you to a cortisol deficiency. If ignored, this can become life-threatening!
Whenever you are tapering steroids after long-term use, it’s important to be aware of the symptoms to look out for. I don’t know how common it is? I don’t if it’s pretty rare? But I do know what to look out for, and if I do start experiencing any signs of Adrenal Crisis, I will up my steroids straight away! It’s something you can’t ignore!
Hopefully, I will be fine! I have a goal to be down to 5mg of Prednisolone by the end of the year, and I’m determined to reach it!
That’s it from me this weekend.
Until next time,
Goodbye for now
Emma
xox
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