Hope you’re all having a wonderful weekend!
I’ve had quite a bad weekend pain and fatigue-wise. The wolf has been extra angry with me, and I’m not sure why! I was in bed before sunset last night, which felt rather odd! I know the days are getting longer, but they’re not that long yet!
But what a contrast to last weekend though! Last weekend, I was standing at the coast capturing the beautiful sunset. I couldn’t walk far, but I could stand with the camera, and enjoy watching the waves crash against the shore. Last night my body was too weak and in too much pain to even attempt that. Instead, I watched the sunset through the bedroom window, from my bed.
Better Days are Coming
On Thursday, I had ‘the phone call’! The news I had been so longing to hear! My prescription has been signed off and has been sent across to the day ward. I am going to be having my first dose of Belimumab next week!!! Honestly, it makes me feel so emotional just thinking about it!
I am nervous about having my first dose. I don’t know how my body is going to react. I know I have to spend longer in the hospital for my first dose, to check for any reactions to the drug. But hopefully, it will all go ok! They said I might feel unwell for the first few doses too, but over time, as my body gets used to the treatment, the side effects should hopefully ease.
Weekly Injections
Belimumab comes in infusions or injections. I was originally down to have monthly infusions, but now my Rheumatology team has changed it to weekly injections. Not sure why? I did ask the nurse who rang me on Thursday, but she didn’t know why, she just had my prescription in her hand.
It’s a bit of a pain! It now means I have to go into the hospital once a week for the injection, instead of monthly for the infusion. I’ve asked about injecting myself at home like I do with my Methotrexate, but at the moment this is not possible. However, they did say maybe in the future.
I’m going to ask my consultant on Thursday at my appointment, why my treatment has been changed from infusions to injections. I’m interested to know why! I wonder if it’s because of the dose I will be getting. The infusions were going to be 400mg once a month, whereas the injections are going to be 200mg per week. So I’m going to be getting a total dose of 800mg a month, which is double! So maybe he thinks I need a stronger dose to get the angry wolf happy again?
Not Sure What I’m Going To Do About Travel
Regarding travel, I’m not sure what I am going to do! Another question I need to ask on Thursday. If it was the infusions, it was going to be ok, as I could have planned all my trips around them.
Travel is such a big part of my life, so I need to find a way of making it work with this new treatment! The wolf has taken a lot away from me, but one thing I will not let him take away is travelling!
MRI Results
Other good news I have received this week, my MRI scans have come back clear. So so so happy! I will be having a follow-up appointment to see what the next plans are for my eye muscles. But at least now we know there isn’t any other underlying problem causing my eye muscles not to work correctly, and that it is solely down to my Lupus attacking my eye muscles.
Decision on my Circulation
You might remember from a few weeks back when I talked about my circulation and how painful my hands and toes have become. How my blood vessels have narrowed back up after my last round of Iloprost.
Next week, when I see my consultant, a decision is going to be made about my circulation moving forward. I’m very likely I’m going to get referred for another round of Iloprost unless he has a new idea up his sleeve. I can only hope! The thought of needing another round of Iloprost just breaks my heart, but at the same time, I will go through anything to get my circulation back. I’m fed up of being in so much pain with my hands and toes!
That’s it from me this week! We are planning to be away in the van next weekend, so probably won’t be a blog. Not 100% sure if we will get away, it will all depend on what state my body is in. If I am feeling like I am this weekend, we won’t be going away.
Until next time,
Goodbye for now
Emma
xox
If you would like to be notified each week, when my blog goes live, straight to your inbox, please subscribe here:
(don’t forget to check your junkbox for the confirmation e-mail!)
My book, How I Tamed the Wolf, Living with Lupus is available on Amazon via this link:
https://www.amazon.co.uk/dp/B09M73X2JQ/ref=cm_sw_em_r_mt_dp_MWAF58981F0VVMNRV1WN
Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
