Happy #humiraday – the Last One!

This is my last dose of Humira! Last one! An end of Humira (end of an era…get it? *sigh*)…My bi-weekly injections stopped working their magic probably over a year ago. Although I could get approval for funding for weekly injections for 3 months at a time, for whatever reason a year of this funding was rejected a first, second, third, fourth time….

It’s ridiculous because it WORKS! The final time my gastro doc put in a request for funding he very clearly stated to whoever approves it that if it got rejected he would be applying for me to start Entyvio which is actually more expensive! His words in the letter – “if this is refused then the next line would be Vedolizumab which is more expensive which sounds counterintuitive”. YES! Go doctor!!!!

Anyway, it got rejected and I’m now 2 infusions in on Entyvio but have one Humira injection left. I’d normally post about what had happened since the last injection 2 weeks ago (the good AND the bad) but feel it’s only right to think back to some of the wonderful happy things that have happened since I first started using Humira back in March of 2014… Continue reading “Happy #humiraday – the Last One!”

Happy #humiraday #5

A new roundup with what has been happening since my last humira shot. The good, the bad, fun stuff and things I've learnt - I try to spend time every time I take my injection to look back on what has happened.

I started my #humiraday posts because I found it a good way to look back over the last couple of weeks and have a think about what I’d been up to, how I’d been feeling…I’m actually getting very close to the end of my own #humiraday because it stopped working so well for me and funding didn’t allow an increased dose (i.e. weekly shots).

This is my second to last Humira injection and I’ll post again for my final shot but need to think of ways I can keep a weekly/bi-weely roundup as it wouldn’t be a proper diary without some form of regular posts, right?!  Until then, here’s what’s been going on since my last injection… Continue reading “Happy #humiraday #5”

Entyvio – My First Infusion

Entyvio (vedolizumab) - what is it like? This post is about my first experience with an infusion - answering questions about what to expect, what happens, side effect and how I felt after the treatment.

Yesterday was my first Entyvio (aka vedolizumab) infusion and before I went, I had questions galore.  Once I had the go-ahead for the treatment, the doctor didn’t give me any information about the whole process or what to expect (they’re usually pretty good so don’t know why they didn’t think to give me any info ahead of it!).  There’s a LOT of technical information out there on the WWW, but I couldn’t really find much about what it was actually like – what happens when you go for your infusion, how you feel afterwards, etc. so I made a list f everything I wanted to know, put it out to the Crohnie community on Instagram and was blown away by not only all of the answers but messages, love and support from everyone!

Thanks to Instagram, I had answers for everything I was curious about from people who have already been taking Entyvio but then I though “hey!  Now that I’ve had my first treatment, why not answer my own questions?!” (and maybe add a few bits about how the treatment went that maybe I didn’t think about asking before).

Here we go!

10:30 am, I checked in at the Ambulatory Emergency Care desk of my local hospital.  It was pretty packed as they seem to share a waiting room with the blood test waiting room.

Continue reading “Entyvio – My First Infusion”