Hope you’re all having a lovely Sunday!
Two weeks ago, I talked about how the second dose of my new treatment, Belimumab had left me feeling pretty rotten. Well, I have some great news to share! The side effects are easing, and things have improved. Not just by a little bit, but by A LOT!
Is Belimumab my ‘miracle drug?’
I Feel Like Me Again!
For the first time this year, I feel like me again! I feel well!
In fact, I’ve felt that great the past two weeks, not only have I reintroduced running again (short 10-minute runs on the treadmill, easing myself slowly back in). But also last weekend, we headed to Scotland in the van, and I managed a lovely 3-mile walk in the mountains and a bit of paddle boarding. It was great! I honestly couldn’t stop smiling all weekend! Even my husband, Alex mentioned how lovely it was seeing me back feeling like my normal self again!
Sometimes, you can forget how much it can affect your loved ones, as much as it does yourself! Alex was saying to me, how it’s been hard for him the past few months, watching me struggle, seeing me unable to do the things I love most. And even though I try and keep positive. He said, there’s a different kind of smile that lights up my face when I’m feeling well.
Last weekend in Scotland, he noticed that smile was back!
On Monday night, we were sat having tea, when he said to me, ‘the best thing about this weekend, seeing you so happy again’!
Honestly, all year I’ve been dreaming about my life with this new treatment. About being back out in the van, having adventurous weekends again! Just shows you, if you don’t give up hope, dreams can come true!
Here’s a little photo dump from last weekend:
Dropping my Steroids Down
Not only have I felt well enough to do things I love again, I’ve managed to drop my steroids from 10mg to 8mg! Which any of you who have tapered steroids before, know that’s an achievement in itself! Tapering steroids is hard! I’m doing it by 0.5mg per week, slowly, to prevent as little side effects as possible. It seems to working! Other than feeling a bit tired on days two and three of the taper, its going very well so far.
Everything my nurse said, is true! She said from dose three not only should I start feeling the benefits, the side effects should start to ease, and they did! She also said this treatment is going to be a game-changer for me. So far, it’s heading in the right direction. But I know, it’s still very early days!
The Side Effects
Regarding side effects, I still get some, but nothing compared to how it was! I think the hardest thing I found this week with the side effects, I was feeling so good all day Monday. Then Monday night, literally within 30 minutes of injecting, I went so downhill! The good thing about injecting on a night, you do sleep through most of the side effects. But it was hard mentally! I was enjoying feeling good! I didn’t want to feel unwell. And even though I knew it was the Belimumab making me feel well, at the same time, it had the power to take it away from me!
I spent Tuesday in a sulk over my belimumab. I hated the drug! However, by Wednesday, we made up! I was feeling great again, and the side effects were soon forgotten about!
Yes……currently I have a very love hate relationship with Belimumab! But I know each week, the side effects will get less and less, until they will hopefully eventually disappear all together. Just like they have with my Methotrexate.
That’s it from me this weekend! There will be no blog for the next few weekends. Next weekend, we are off paddle boarding or body boarding, depending on the surf conditions with the family, for my dad’s birthday. The following weekend, it’s my Grandma’s big 90th, so a big celebration is underway for that. And the weekend after that, we are hoping to be away in the van, all being well!
So hopefully, next time we speak, I’ll be down to 6mg of steroids, no longer having side effects from my Belimumab, feeling fabulous with the wolf, and my bloods come back good from my first month’s test. Oh, and hopefully running a bit further than 10 minutes on the treadmill, and maybe even ticked off my first mountain of the year.
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
