Another round of Iloprost ticked off! Oh, I am so glad it’s all over until next time!
This round of Iloprost was a bit different to previous rounds. Instead of receiving my Iloprost over 5 consecutive days, I had it spread over two weeks due to bed availability. Honestly, I didn’t like it!
I had my first 4 doses on consecutive days. These went well, or as well as Iloprost infusions can go. I tolereated the full doses, the pain was not nice, but I was tolerating it ok. I did run a fever, but that’s normal for me, and I kept falling in and out of sleep, so the days felt as though they passed a little quicker.
Friday Night Felt Odd
However, it was a weird feeling on Friday night! Normally, Friday night is when I can celebrate the fact that my infusions are all over. I normally head into the weekend with a huge relief, knowing that’s another round ticked off. All have to think about is resting and recovering.
But this Friday was different! Instead, all that was on my mind was the fact that I was going back to the hospital on Monday for my final dose.
I tried to enjoy my two days at home, resting, looking after myself, and getting stronger for Monday. But it was hard mentally.
Monday Was Tough
Monday came, and honestly, I found the day very hard. Even though I did well and ran the infusion at my maximum rate, the day was a struggle with pain and tiredness. But as always, I somehow pushed through it, and that evening I could finally, happily celebrate the end of my infusions.
The rest of the week has just been spent at home, resting, and slowly getting my strength back. It’s been a long week, but knowing my Iloprost infusions are over with for another few months, feels like a whole wait has been lifted off my shoulders.
8 Attempts
Of course, my 5 days of infusions didn’t go without any drama with my veins. But this round was quite successful! Just 8 cannula attempts was pretty good going!
Most mornings, my day started with my hands in a bowl of warm water, to try to bring my veins up. By Monday, the ward sister had to come and cannulate me, as nobody else wanted to attempt it. And having Iloprost and cyclizine going through your little veins in your hands is painful. Nevermind all the tracking you get too!
Iloprost Vascular Rashes
My hands and toes are now on the road to recovery. It can take two to three weeks after the infusions for your hands to heal. Good news though, during my infusions, I developed something called Iloprost vascular rashes on my hands. This was a good sign that my treatment is working.
For anyone who doesn’t know what an Iloprost vascular rash is, it’s a vascular rash that develops over areas that have struggled with restricted blood flow and chillblains for a long period of time. It’s when these areas suddenly have their blood vessels forced open again, the rashes form.
Other News
On other news, my specialist nurses came to see me while I was in hospital, which was lovely. She asked how I am getting on with my Belimumab. I mentioned about my troubles I’ve been having with injecting on my thigh, and the rashes and bruises I’ve been getting. And how it’s only my Belimumab and not my Methotrexate injections.
Over the next few weeks, she wants me to have a go at injecting myself on my belly again, to see if that’s any better. I used to inject into my belly last summer, to give my thighs a break. But then I started getting belly ache, so I stopped. So we will see how the next few weeks go. If this fails, I might have to accept going on IV for a while.
That’s it from me this week.
Until next time,
Goodbye for now.
Emma
xox
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