Happy 1st of September!
This week’s blog is a little summary of everything. An update on how I’m doing since starting my new treatment just over 12 weeks ago. The period of time it takes for the biological to work. Then after this week’s blog, I will be logging off until the end of September, because next week, we set sail to the Outer Hebrides. Honestly, I cannot wait!
Thank You
First of all, I want to say a massive thank you to each and every one of you who gave me some advice about my eye drops, from my last blog. I really appreciated it!
For anyone who is struggling using Cyclosporin eye drops, a lot of the main, repeated advice I was given was to try and use some moisturising eye drops after using your Cyclosporin eye drops. This prevents your eyes from drying out too much, which I’m guessing what causes the burning feeling. But just wait 10 to 15 minutes minimum before putting them in, just to give chance for the Cylosporin eye drops to work. You’re moisturising eye drops are any that you use for your dry eyes.
But please remember, this advice hasn’t come from any doctors, just people’s experience. If you have been advised differently from your doctor, please do speak to them first.
My Birthday
I had a great birthday weekend! We headed to the Shropshire Hills and did two lovely walks. Why this has been our first trip in Casper here I do not know! There are so many great, and not too strenuous walks you can do! If you love trig bagging, the Shropshire Hills is the place to go! So many to tick off, yet not too challenging!
On the Saturday, I climbed Pole Bank. Only a little hill with a trig, sitting at just 516 metres above sea level. But I was ecstatic! The first trig I’ve touched in a very long time! It marked a moment of knowing how far I’ve come along on my new treatment. A moment I had spent months dreaming about!
Lupus Rashed are Back
As much as I’ve come a long way in my journey with my Belimumab, things are far from being under control! My face is a mess and I hate it! It’s covered in Lupus rushes. I’m back on my Tacrolimus Ointment to try and get rid of them. It’s not the nicest of ointments to use, as it leaves a burning feeling on my skin, but it works.
Another Round of Iloprost
My circulation is not good! To be fair, it hasn’t been good since July. I’ve been very reluctant to tell my nurse as I hate the thought of knowing I probably going to have to go back into hospital for another round of Iloprost.
However, my nurse rang me on Friday to see how I was getting one. I decided to do the right thing and mention about it, especially with autumn coming. Right now, my hands and toes aren’t too painful. Just swollen, covered in chilblains, and keep going a funny purple colour. But I know as soon as it does get colder, my hands are going to get very painful again like last winter, and probably end with them ulcerating again. When this happens, it’s so painful!
My nurse is going to speak to my consultant and look at getting me into the hospital before winter arrives for another round of treatment. The only issue she is worried about, it was only four months since I had my last lot of Iloprost. My treatment doesn’t seem to be lasting very long. But it could also be due to the fact, that I had my last round of Iloprost before I started my Belimumab, when my Lupus was very active. Maybe, this time it will last longer. I can only hope!
My Stomach
My stomach has been so bad recently due to my iron and B12 tablets. It got to a point were I was struggling to eat, feeling so sick, and just being in pain. Thankfully, I’ve managed to get my stomach somewhat under control again. But honestly, gastro issues drain you so much!
Basically, I’m back on 60mg of Esomeprazole again, which I’m not happy about. It’s a very high dose, which my Gastro Consultant has had to approve. My GP doctor was worried about this dose back at end of last year, because of the effect it has on your bone health and the fact I’m on long-term steroids with it. I then spent a good part of this year, getting myself onto a lower dose, with the balance of amount of acid foods I could eat in a day, without setting my stomach off. It was hard, but I found a good balance, and was happy. The last thing I want is bone problems!
It scares me a lot that I’m back on this high dose again, potentially damaging my bones, yet I have no choice!
So along with my high dose of Esomeprazole, I now take my iron tablets every other day, and my B12 I’ve reduced them to twice a day instead of three times a day, and with food, instead of on an empty stomach. And then I was taking Famotidine on a night to heal my inflammation, but now I’ve thankfully been able stop it.
My Asthma Review
I had my annual asthma review the other day. It went really well! My asthma seems to be under control with my steroid inhalers and my Montelukast tablets. I’ve not had a single chest infection in the past year, which is progress from the year before. I’ve barely had to use my blue inhaler. The only concern she did have, was the fact I had been on a higher dose of Prednisolone for the past year. She said that may have been helping to keep my asthma under control.
So this year, now I’m on a lower dose, and hoping to lower it further, it be interesting to see what happens with my asthma. Hopefully, nothing, and I have another good year. I know since been on the Montelukast tablets, my peak flow reading has been a lot better. So hopefully it’s that, that’s been keeping my chest well, and nothing to do with my steroids.
My Annual Bloods
Along with my annual asthma check-up, I had my annual bloods done. This is where they do extra blood tests for anything you may be extra risk of. Two of the tests they did, were my cholesterol and my diabetes.
My cholesterol levels are really good, which is great news. However, my diabetes has worried me! My reading is 38mmol/mol and pre-diabetes is 42mmol/mol. Last year, it was in the 20s. It’s gone up a lot in just a year!
I know why! This past year I’ve been on a lot of high doses of steroids. They’ve always said to me, there’s a high risk of diabetes because of my steroids, hence why I get tested yearly for it. I eat a fairly low-sugar diet, I have a healthy body weight, and I exercise when I’m well enough to do so. So there’s not a lot more I can do, other than get myself on the lowest dose of steroids, my body will allow.
My Steroids
I got my steroids down from 10mg to 7mg, which I’m very happy about. But now I’ve taken a little break with my dose reduction. Mainly because of my iron and B12 levels being low, that’s been putting enough strain on my body. Therefore, I didn’t want to stress my body out any further. And then with my road trip being around the corner, I wanted to get my body stronger for that so I can enjoy it to the max.
So my plan is, after my trip, I will get back to reducing my steroids by 0.5mg every couple of weeks, with an aim to get down to 5mg for Christmas. Or as low as my body allows.
I think that’s it with all the updating. My eyes are still feeling very dry. That plug they replaced the other week, hasn’t made any noticeable difference. But I’m not surprised though! I didn’t notice I had even lost it!
I do question, is this the best things will get on this new treatment? Is this how my life will just always be? Somewhat managing it, but yet still a struggle? Will I ever get strong enough to climb a mountain again? Or will hills be my limit? Maybe, things will improve once my iron and B12 levels improve, and my gastro issues stop draining me to the ground? Maybe I always be in pain with my joints, but just more manageable then it was before?
I don’t dare complain about how I am feeling, because what I have now is 10 times better compared to how it was. It’s easy to forget, but little reminders here and there, remind me of the progress I’ve made. I’m grateful to be where I am, yet, I still crave the life I had back in 2020, when I felt invisible to my illness. That’s the life I want back!
I may get there, I may not, I can only hope!
See you in a few weeks!
Goodbye for now
Emma
xox
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