It’s been an interesting two weeks! Two weeks full of so many different emotions! I had the excitement, with the fact I finally was starting a new treatment I had long waited for. Yet, a treatment that has left me feeling pretty rotten!
The Long Journey
At the back end of last year, I was put forward for the biological drug, Belimumab, after all my other treatments had failed to keep my Lupus under control. At the start of this year, I had all my pre-testing, counseling, and got approval from the Drugs & Therapy board. However, just as I had the green light to start my new treatment, my nurse who went to order my injections, found out there was a National Shortage. We then sadly spent weeks unable to get hold of any stock.
Finally, in April, just as I was about to give up hope on this treatment, I received good news! The National Shortage had come to an end, and my injections had been ordered.
On Monday the 3rd of June, I headed into the hospital to receive the first dose of Belimumab!
My First Two Doses
For my first two doses, I had to have them in the hospital in the day ward. This is because, with biologicals, reactions can happen. They often happen on the second dose, and not the first. So after I had each injection, I had to be monitored for 30 minutes. Thankfully, I had no allergic reactions!
Not only that, I had to be trained and signed off for self-injecting. As I already self-inject with Methotrexate weekly, this was a breeze for me! I just need to remember to alternate legs for each injection and space them throughout the week.
So on a Monday, I inject my Belimumab, and on Thursday, I inject my Methotrexate. If I inject my Belimumab in my right thigh on Monday, I need to inject my Methotrexate in my left thigh on Thursday. Then the following Monday, I need to inject my Belimumb in my left thigh, my Methotrexate in my right thigh, and so on! Basically, everything needs to be rotated. Yes……please do wish me luck remembering all this! I feel like need a calendar dedicated to my thighs!
My Second Dose Has Been Rough!
My nurse said to me, ‘things will get worse before they get better. But when they do get better, they will get A LOT better!’
This has been going around in my head, over and over again!
After having my first dose of Belimumab, I spent the days after feeling quite tired, and nauseous. It wasn’t nice, but it was manageable. I was just feeling more upset at the fact I was feeling so good the week prior to this. And now I was feeling back to how I did before my dose increase of steroids. But I kept telling myself, it’s ok, things are going to get better from here.
I then went into the hospital for my second dose. From here things got a whole lot worse!
I Have Felt Absoutely Rotten!
This week I have felt absolutely rotten! My fatigue has been on a whole new level, I’ve had so much nausea, no appetite, headaches, stomach aches, and my body has been hurting all over. It’s been a horrible week! This second dose has been nasty!
My nurse said to me on Monday, this week is going to be rough. Honestly, she was not wrong! But she also reassured me, from week three, the side effects will start to ease. She explained how it’s a bit like having a vaccine. The side effects are just my body’s reaction, trying to fight off the new drug being put into my body.
Since Monday, I’ve been speaking to other Belimumab warriors too. I’ve been needing all the reassurance I can get! Thankfully, I’ve been reassured how I’m feeling is the norm, and each week the side effects will start to ease, like it did for them too. They also suggested about injecting at night, as you sleep through some of the side effects. Now, many of them said they didn’t get any side effects, 1 year, 2 years into treatment. And if they did they wouldn’t know because they inject just before they go to bed.
When you have a lot of people telling you it does get better week by week, it gives you that strength to keep fighting the side effects, because you know it’s only temperory. You know, if get through this tiny, rough patch, the better days will come and it’s worth fighting for them better days.
Ready For Week Three
This weekend, I’ve started to a little bit better! The side effects are finally starting to wear off. But tomorrow is Monday, which means my body is going to be getting another shot of Belimumab. I can’t say I’m feeling pretty thrilled about it! But my nurse said from week three the side effects should start to ease off, and the drug should start to work. Which in theory, this should mean……..tomorrow is the start of my journey to getting the evil back wolf under control, once and for all!
That’s it from me this week! In my next blog, I will hopefully be able to tell you how much better I’m feeling and I’ve got all the drama with my bloods to tell you about!
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
