Good morning! đ
Tomorrow, I go in to hospital for 5 days of Iloprost. Can’t say I’m looking forward to it. But I keep telling myself, this time next week it be all over with, and then I can just relax, enjoy summer, sand hopefully have a bit of relief with the pain in my hands.
Just After 7.30, Friday Morning
I knew I had been referred for Iloprost, but I wasn’t expecting the phone call I got just after 7.30 on Friday morning! Apparantly, the ward have had problems with patient referrels and issues getting letters out to patients. Hence why my nurse last month had to chase on my appoitnment after referring me in April, and why I had no warning about next week, until this Friday just gone.
In one sense, it’s kind of good I had very little warning. It meant I didn’t spend all holiday worrying about it. It’s weird, even though you know you’ve been referred and you’re waiting for the date, nothing feels real until you actually have the date. When I have the date, that’s always when my anxeity kicks in, and I start counting down the days.
The Plan After
The next 5 days, I have to stop my Amlodipine. After my Iloprost, I will restart it and see how my body responds. The Iloprost will open back up my blood vessels, and then I’m hoping the Amlodipine will help to keep them open.
I know on last weeks blog I was saying I wasn’t sure if the Amlodipine was helping, and how the Nifedipine seems to work a tiny bit better. I’ve decided to stay on the Amlodipine after my infusions. Amlodipine gives me very little side effects, were as Nifedipine makes me feel quite poorly. And honestly, I don’t think I ever want to go back on Nifedipine! Also, I don’t feel like I’ve given Amlodpine a real chance to fully work yet. So it will be interesting to see how many body responds after my Iloprost. I feel like this will be the true test!
Increased Dose of Methotrexate
I had my first increased dose of Methotrexate this week. I’ve increased it from 15mg to 17.5mg. I had no side effects, but I’ve always been lucky enough to tolerate Methotrexate well.
I had my blood done on Thursday. She managed to find a different vein, but I’m a bit bruised!
I haven’t had my results back yet, but they should be ok. I wouldn’t have thought just one increased dose of Methotrexate would have a knock-on effect. I hope not anyways, otherwise the plan of increasing my Methotrexate will be aborted very quickly, which is not what I want!
Ran Out of Belimumab
I’m not going to get into too much details about my Belimumab on here. But long story short, we are in the process of my getting my Belimumab sorted with a homecare company and there has been a few issues along the way. This has meant there’s been a delay in getting my medication out to me. Because of this, I’m not without my injection.
There’s never a good time to run out of medication, but frustratingly, this has come at an extra bad time with me having my Iloprost next week! I’ve been feeling mentally exhausted all week, trying to chase it, trying to find out what the holdup is. I now have answers, and hopefully, the issues will get sorted next week.
That’s it from me this week!
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
