Thursday 22nd March

My first Entyvio infusion has been delayed again! Apparently they don’t have the drugs available for tomorrow.

I’ve rescheduled for the 6th of April as that’s the most realistic time when I can actually work from home and leave for the 2 hours they said it takes then go back home and make up the time for work. I am lucky that I’m able to work from home but it must be so frustrating for people who can’t when appointments like this just get rescheduled at the drop of a hat – I’m guessing they’d have to take more time off work which just isn’t possible for everyone!

Monday 19th March

I’m frustrated.

I was supposed to get my humira delivery on Friday but Healthcare at Home screwed up the delivery. I was supposed to take my shot on Friday but due to their fuck up I’m now having to wait until I get my next delivery to take my dose. I wouldn’t mind so much but when I phoned up today to make sure I was actually getting that delivery, they said nothing was scheduled. So delivery is scheduled again for Wednesday and I’ll be almost a week late for my shot.

I was also due to have my first Entyvio infusion on Thursday but it’s now been pushed back to Friday because they didn’t check that the pharmacist would be there on Thursday. Luckily I have Thursday and Friday booked off as holiday from work….

Tuesday 5th March

I had a call from my gastro doc this afternoon. Surprise, surprise, the request for weekly humira for a year was rejected. Again. The doctor is now talking about moving me to Entyvio, an infusion, which makes no sense because it’s more expensive than weekly humira shots (which have definitely worked for me in the past) but easier to get approved.

I am a bit scared about moving on to another medication. Will it work? Will I get side effects from it? It was one thing taking pills in the form of azathioprine when I was first diagnosed and then stepping up to injecting myself bi-weekly but now having to go to hospital for treatment?! It’s a bit overwhelming!

I’ve heard really great things about Entyvio and the fact it targets just the gut and not my entire immune system sounds like a big plus. It’s just whether it will work, will I have side effects and managing spending 2+ hours in a hospital around my full time job.

It’s not been signed off yet but suspect it will be so am doing as much research online as I can. I’d love to hear from anyone who is on Entyvio as to how they feel during and after the infusion, has it made a difference, how they pass the time in the hospital – let me know!