What An Infusion Is Like
So, just before I start this article, I wanted to mention that I have been on the Biosimilar Inflectra (Remicade equivalent) since April 2018. At first, I got infusions every 8 weeks, which then turned into every 6 weeks as I needed them more often. I’m allergic to Ibuprofen, so all anti-inflammatories are off of the table for me. Biologics were the first step of treatment for me, which I know isn’t too common.
I was so nervous for my first biologic infusion
Before I got my first infusion, I was extremely nervous. I have anxiety about just about everything, so this was no exception. The days leading up to it were filled with crying, worry, and lots of Googling. I wanted to write this article to ease that worry of anyone that may be getting their first infusion soon or anyone who is even thinking of Biologics as an option.
The first one
My first infusion was on April 4, 2018. It was at 7:45 am and that was a struggle in itself. My mom and I took the city bus over to the hospital, and my nerves were at an all-time high. Most of my worry was about the IV being put in my hand. I’ve never done well with needles going into my veins. Shots are absolutely no problem for me, but taking blood? Forget about it. I got bloodwork the first time I saw my Rheumatologist and it did not go well. I immediately went from the chair to the bathroom where I lied on the floor for about 10 minutes with almost no vision. Needless to say, I’ve now learned to take apple juice to every infusion and chug it.
The nurse always takes blood first, immediately followed by inserting the IV into my hand. I’ve found that the easiest thing is to 1. Look away from what they are doing, and 2. Take deep breaths. This seems to help the most, but sometimes the nurse may not know what they are doing as much, and I still feel like I might faint. But in my case, my veins are very small and they suck at giving blood. So that probably has something to do with it.
The nurses are always so accommodating and helpful, you can have a blanket on you if you’re cold, an ice pack if you’re hot. I always ask to be pushed back in the chair so my feet are up, and I’m basically lying down. You want to try to make yourself as comfortable as possible.
Once the actual IV is into my hand or arm, everything is fine. For the first 3 infusions, you have to be there for a total of 3 hours. Two of which are with the actual drug flowing, and the last hour is with the IV out of your arm, and you just sit there to make sure you don’t have any bad reactions to the drug. The first 3 infusions are also closer together, mine were Day 1, then 2 weeks later, then 1 month later. From there on, they were every 8 weeks. Until this January, when I noticed I was getting flares more often, and we changed it to every 6 weeks.
Learning to love my time there
3 hours may seem like a really long time, but I learned to love it. It’s completely YOU time. You can’t get up (unless you have to go to the bathroom), you can get work done, listen to a podcast, scroll through your socials, with basically no interruptions. The nurses have to check your vitals every so often, but that's no big deal. After the first 4, mine went down to 1 hour, and that’s a piece of cake.
I’ve had 10 infusions now. They definitely get easier as time goes on, and they become just a part of your life. If I’m being completely honest, I kind of enjoy them now. Once the IV is actually put in, of course.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?