Hope you are all staying safe in the wild Storm Isha!
Last weekend we had such a lovely weekend in the Lake District National Park, in our camper van, Casper. We climbed two little Wainwrights, which was enough for my body right now! My body just isn’t strong enough for any big mountains at the minute, and that’s ok! I was just grateful to be able to do what I did do!
We climbed Dodd and Latrigg, two new Wainwrights ticked off, so I was more than happy! I think Latrigg is the 9th smallest Wainwright in the Lakes. Standing at just 368 metres above sea level, making it one of the easiest fells to climb! Plus, you can drive two-thirds of the way up, so your only climbing about 100 metres to the summit, give or take. Honestly, if you are looking for a nice gentle Wainwright to climb, Latrigg is the one to do!
Here’s a little photo dump of last weekend:
It’s Been A Big Week!
It’s been a big week this week! On Tuesday morning, I met up with my Rheumatology Specialist Nurse to prepare me to start my new biological treatment, Belimumab (Benlysta).
At my appointment, I filled in an assessment form about where my illness is currently at. I think this then will be done again in a years time, to compare the improvement. She then arranged for multiple different types of blood to be taken, including blood for Hepatitis B and C, which is the protocol for starting any biological treatment. She sent a referral across to the chest clinic for a TB screening, again protocol when starting biologicals, and she contacted MDU, the ward where I will be receiving the infusions.
After all that, she then counseled me on what to expect, and the side effects. She then went on to explain how I am going to become more immunocompromised and then I already am, and how I need to be extra careful. She explained how my first three infusions are going to be every two weeks, then they are going to be going monthly thereafter. She explained how the infusions are an hour long, but the first few I will be kept longer, in case of any reactions.
My Methotrexate Has Been Discreased
Unfortunately, nothing is straightforward with the wolf and starting a new treatment! Currently, I’m lymphocytopenia, which means I have very low lymphocytes. For anyone who doesn’t know, lymphocytes are an important part of your white blood count. You need lymphocytes to be able to fight off infections.
As my new treatment is going to put more strain on my already weakened immune system, my Rhuemtalolgy team has decided to decrease my Methotrexate from 20mg to 15mg. They hope by reducing my dose, my lymphocyte count will increase slightly before I start my Belimumab.
However, since decreasing my Methotrexate, my body has become ever so fragile. The pain in my joints is getting worse day by day, and my fatigue keeps knocking me for six. Methotrexate is one of my most important medications! I knew dropping it was never going to be good news, but I was hoping it was going to take a little longer before would start to feel the impact on my body.
How in just a week everything can change, all because of one dose change in some medication! How last weekend I was climbing little Wainwrights, having a very wholesome weekend, doing what I love most! Then just one week on, how this weekend, I’m almost in tears walking up and down stairs, in pain. This is why you have to take any opportunities you have, and completely live in the moment!
The Wolf Is Just Too Active
The wolf is just too active! So any little change like this is just giving the wolf the green light to attack more! I can see how active he is, just by looking in the mirror and seeing the rashes on my checks. Yup, my rashes are back and I really do not want to use that Tacrolimus ointment anymore to get rid of them, as it just burns my face. That being said, I might change my mind in a few weeks, when my face looks a complete mess!
Oh and then there’s my hands, well that’s a very sore subject! My Iloprost worked for what four weeks?! I put myself through five long days of pain for what four weeks of relief? Honestly, I cannot believe it! At first, I tried to ignore what I had seen. I was hoping if I ignored it, it would just go away. I started to put gloves on my hands indoors, not just to keep my hands warm, but to hard the horrible purple colour of them. But the moment I take the gloves off, the cruel reminder is there waiting for me, reminding me of just how evil the wolf can be!
The wolf is so cruel!
But There Is Hope
The next few weeks are probably going to get worse! But no matter how tough the days get, I need to keep reminding myself, there is light at the end of the tunnel to all this! Knowing I’m going to be starting, what my nurse keeps calling, a ‘life-changing’ treatment. She said to me, the next time she sees me, I will be skipping into clinic. Honestly, that thought has played over and over in my head. It’s a thought which is bringing me the hope I need right now! It’s the thought that’s going to get me through the next few weeks!
I’m at the TB screening a week on Wednesday. As soon as my results come back from that and all my bloods, I will be in for my first dose of Belimumab. They are trying to get me in as quickly as they can, as they know I urgently need it. But also it has to be done safely, with all the correct pre-checks performed.
That’s it from me this week! I’ve got a week off appointments next week, which makes me very happy! I feel like I’ve had appointment after appointment recently!
Until next week,
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
