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.
After about half an hour I was taken into the room where the infusion would take place which was quite a light and open room with 5 chairs and 3 curtained bays. They took my blood pressure, temperature and look oxygen levels and then I was taken to the dreaded weighing chair for them to take my weight.
Next stop – being assigned a chair where my infusion would be taking place. It took a while for the nurses to get everything ready so I had a good look around the room I’m likely to be visiting quite often if I’m going to be having infusions…if I’m totally honest, it reminded me a lot of my grandma’s nursing home but without the decor and flowers. There were 2 TVs tuned to blah daytime TV, a radio playing not quite the latest hits in the background, the chairs were all “comfortable” in a medical way (I’m telling fibs, the chair was not comfy at all).
Then came the nurse with the cannula trolly. I’ve had a cannula once before so wasn’t too worried about what it was. It’s basically a flexible tube (not a solid needle) that they put in a vein that is then attached to various little chambers and gets plugged into the bag of medication. It’s all held down in strategic places with thin sticky patches to make sure that nothing moves about too much.
First cannula attempt in my left arm, just by my elbow – fail. Second attempt by a different nurse in my right arm, about 5 inches below my elbow – hurrah! If you have Crohn’s then you will have had a million blood tests – this is no worse than any of those. There’s a little discomfort with having something stuck in your arm for a while but for most of the time I could barely feel it. BTW, if you have rubbish veins like me and know one arm is better than the other, it’s worth pointing this out so they can just go straight for that arm rather than fishing around the other.
How long does the actual infusion take? – I was in the hospital around 2 hours. Once all of the checking in and cannula stuff was done, it probably took about 40 minutes for everything in the bag to be “infused”. they did a final check of my vitals and I was off and ready to go home! I have been told that some places like to keep you in for a while after you’ve taken in all of the infusion to make sure you don’t have any reaction so the total time you’re there might vary,
Do you feel anything while it’s happening? – I didn’t feel a thing! Some people have said that they feel something cold in their arm when it first starts to go into your vein, I didn’t get this.
How do they monitor you during the infusion? – I’d already had by blood pressure, blood oxygen and temperature taken before I started the infusion and every 5 minutes or so they would stop by to do the same, just to make sure I was doing ok. The nurse who put in the cannula kept checking in with me, giving me a thumbs up every so often as she knew this was my first time.
Top tips for what to do while having your infusion – A lot of my Instagram pals said they took snacks (I didn’t and didn’t see anyone else snacking but snacks are good so take some!), some form of entertainment (I had my phone so had Sim City, Words with Friends and, of course, Instagram!) and a blanket or pillow to make yourself comfortable. Also, water! A couple of people mentioned this to me. While I was in the room, I saw 3 people struggle to have blood taken/cannulas inserted because they weren’t hydrated enough. It sounded painful as hell so even with my limited experience I would say drink a lot of water before and during!
Any side effects? – I felt absolutely fine during the actual infusion. Not long after I left the hospital I started to feel tired. REALLY tired. And then beyond tired, fatigued. The 10 minute walk to and from my local supermarket to pick up essentials for the next day (hummus, pita, milk) left me utterly wiped out like I’ve never been before. Note to self: don’t plan on doing anything after my next infusion and take it easy the day after.
How do you manage time off work for the treatment? – I’m so, so lucky that I’m able to work from home when I need to so will schedule my infusions around that. I usually work from home on Fridays so will log on 2 hours early, get all the super important things done early on and then go to the hospital. I learnt yesterday that I’m going to be completely wiped out when I’m done with the infusion but will still need to do some work so just need to make sure my afternoon jobs are the easy ones!
How long does it take before Entyvio starts to make me feel better? – it’s not instant unfortunately and can take anywhere from 6 to 14 weeks to see any sort of improvement to symptoms (according to the Entyvio website). I’m currently still taking bi-weekly Humira shots and tapering off prednisone so there will hopefully be a good overlap of the different treatments to keep my symptoms at bay!
I just want to add at the bottom of this massive post a big thank you to everyone who got in touch with me to tell me about their experiences with infusions, their messages of support and some people even checking in with me (I HATE that phrase but….) to make sure I’m feeling ok – I love that there is such a wonderful online community out there who look out for each other!