Cheesin' during the infusion, as per usual
I am veering wayyyyyyy off my normal topic choice today, folks. If you're expecting some cute outfit posts, I'm sorry to disappoint! I will get back to normal posting after Memorial Day. :)
I posted a while back about being diagnosed with UC, and I recently started this medicine called Remicade. As I was doing research about it and gathering information, I realized the the internet is a
terrifying place where everyone complains and no one ever discusses positive experiences.
Boo. I figured I would contribute to the noise on here. Hopefully, someone stumbles upon this and I help ease their fears a little bit!
I won't go into the details of what Remicade is and how it works. There's a lot of medical mumbo jumbo that is hard to explain. Ha. Go
here if you're curious. Initially, I heard pretty horrible things about this drug and worked myself up about this first appointment. I had heard that people had terrible side effects, that their first infusion landed them in the hospital, that they hated having an IV in, all that jazz. Thankfully, I have a friend who started Remicade a few weeks before I did and she gave me her perspective which was overwhelmingly positive. Even when I was super nervous about what would happen, I did have one person that I knew personally who had a positive experience. (Thanks, Caitlin!) I think what made me most nervous was the thought that my body would completely reject Remicade and send me back to the hospital. I was nervous.
The day of the infusion was as normal as they get: get up, go to work, meetings, etc. My appointment was at 1:30, so I took the afternoon off of work for the first infusion to see how my body reacted and to allow enough time to get where I was going. (I am crazy about being on time to places. It's a gift and a curse.) Normally the infusions last about 2 hours. I was told this one would be a bit longer than that in order to fill out some paperwork and get everything settled since it was my first one. I was also told to eat a good lunch beforehand and
eat a good lunch I did. Silver Grill, nom nom nom.
My boyfriend came with me for the first infusion so I didn't have to be by myself. It was also nice knowing I had someone to drive me home in case I couldn't. The nurse who was in charge of the infusion asked me to take two Tylenol and a Claritin before I came in. These help alleviate some common side effects (minor allergic reactions and headaches, things like that.) I heard that a lot of folks take Benadryl--I don't like being drowsy so Claritin was a better option for me personally.
When we got to the room where I would be sitting I was pleasantly surprised! I had it in my head that there would be a ton of chairs and look like a hospital ER or something. The room was small, and the chairs were SO COMFORTABLE. I can totally see why people like to nap when they go in for Remicade appointments. After getting me comfortable, the nurse got the IV all hooked up. Honestly, this was the worst part for me. I think the only time during the entire appointment I thought I would lose it was when she stuck me with the IV and said "Oh, you're a bleeder!" ACK. DON'T TELL ME THAT.
Look away Lizzy, look away! After the IV was all hooked up, she propped my arm up on a pillow, covered it with a blanket, and started the infusion. After that she went through all of the basics with me--potential side effects, when I'll come in for appointments, what the drug does, etc. The nurse was wonderful. She really made everything seem manageable and helped alleviate a lot of that initial stress.
After the nurse and I chatted for about 20 minutes I was free to do whatever I liked. I watched an episode of Chuck on Netflix with Sam and then messed around on my iPad for a little bit. Thank you, WiFi! The two hours that the infusion lasted were insanely easy. The nurse comes over to check your vitals every 30 minutes to make sure you're not having a bad reaction to the drug, but other than that they let you do your own thing. I didn't feel anything going in through the IV, the only thing that bothered me was the IV itself. I'm really sensitive to needles, so I was just super aware that there was something in my arm. That's why we put the blanket over it, so I wasn't looking at it the whole time. I'm sure this gets easier over time.
At the end of the appointment she took out the IV and got my next appointment scheduled. I felt completely fine during the whole process, no weird side effects and no drowsiness. I was able to drive myself home after the appointment as well. That night I felt a little more tired than usual and had some minor achy joint pain in my ankle the next day sporadically, but other than that I had no weird side effects and I felt like myself.
It's been a few days since my first infusion and I feel great! I was able to resume my normal schedule the next day and I am feeling confident that Remicade will work well for me.
Just a little disclaimer: I understand that this is not the best option for everyone--the purpose of this post is not to convince people to try it but to offer a more positive perspective for those who are looking. This is purely my opinion and my experience. I hope that if you're about to start this option I helped ease your fears a little bit and Remicade works well for you!
Regular posts will pick back up after Memorial Day, I am heading home this week to see my Mom and help chaperone her 8th graders on their Disneyland field trip (am I crazy?!) Have a wonderful day, loves!