Remicade

Hi there,

As I come up on another treatment of Remicade, I realize how much I had searched the web for any kind of video or blog describing how everyone's experience with this treatment went for the first treatment, what they bring, how it goes, how they feel after, etc. So, I decided that maybe, now that I have had my first treatment, I should share my experience of how treatment 1 and week 0 went. 

The day before my Remicade treatment 

I was a bundle of nerves. I was excited because this may actually help me. Nervous that it wouldn't or that I would react weird to it. Scared about getting poked by a needle. I was second guessing myself and my decision. What if I didn't need this treatment? But I was lucky enough to have someone who supported me by my side. That was definitely something I needed. We both made sure we had everything for the day and made lists of what we should each remember the next day. We also decided to call it a night early because it was going to be a very long day.

The day of Remicade treatment number 1

I woke up early and got ready for the day. My appointment was at 10 am and it is about an hour drive to the hospital. I planned on arriving about 15 minutes early so we could find a parking space and find the infusion center. I went through my checklist and made sure I had everything in both my purse and overnight bag. (Being that I wasn't sure how I would react to the treatment, and being that I live on my own, I chose to stay with someone for a few days.) My purse included: my wallet with ID and medical cards as well as some cash, phone stocked full of games and music, earbuds, water, snacks, and a notebook and pen. I wish I had brought my own blanket and believe I will this time. I wore super comfy clothes and thick socks as well as moccasins for shoes. I don't suggest doing both the thick socks and warm shoes, and I definitely won't do that again. My feet were too hot! 

After heading to my support's house and having breakfast, we got on the road. Before I knew it, we were at the hospital. Thankfully, I found my check in area easy. We were prompted to sit down and wait to be called in. We didn't have to wait long at all before two ladies called me in. They both introduced themselves (one was in training) and walked me through how it all was going to go. I was asked a lot of questions, and was told that these would be asked every time I came in for treatment. They were to make sure that I am not sick before I start treatment being as it does block my immune system. They weighed me and got me into my fancy reclining chair. The room of my infusions has a bunch of these recliners linned up against the walls with most (all but my chair of course) having a tv that people can pull out during treatment. My vitals were taken and I was running a little hotter (99.6 degrees F). They asked me again if I had been sick or running a fever. I told them no. (I ended up staying this temperature the entire treatment and observation. I apparently run a bit hotter.) The IV was put in and I was given the pre-meds of Tylenol (pills) and Benadryl (through the IV). The nurse put the Benadryl in too fast at first which caused me to nearly pass out, but after I was back to normal-ish they finished slower and I was fine. After my half hour waiting period after the pre-meds, I finally began Remicade by 11am. 

The infusion took 2 hours and 10 minutes. It had been a while since I had an IV, so I had forgotten how it felt like you were cold from the inside. They checked me every 15 minutes for a while and then, once it hit a certain point, every 30 minutes. I had an additional 2 hour observation after my treatment was finished. The entire time I was drinking water, eating snacks, and playing games, but it still felt like forever. I was very tired of sitting for so long. And I wished that I was able to sleep, but my IV was bothering me and I felt it more when I tried to sleep. I chose not to tell them being as I may just be crazy and they would probably take it out and poke me again. Passing out once was enough for me. I luckily didn't have any weird reactions, so after observation, we were able to leave. 

After treatment

Directly after treatment, I was a weird mix of being physically exhausted, and mentally awake. I was also very hungry being that It was after 3pm and I had only snacked during treatment. I really wanted a corn dog so we got some before heading home. Once at the house, I just rested most of the day and ate. I had a hard time sleeping that night. Not sure if it was me not being in my own bed, or because I just felt a general sense of being off, or if it was because I had to use the restroom so many times, but, I remember waking up at 3am thinking that I had slept in and was wide awake. It took me another hour to get back to sleep. 

The next day I was ridiculously hungry. I had forgotten what it was like to have an appetite, so I kind of liked it. I remember thinking "At least I'm not nauseous." It was on the crazy side though. I was feeling good, so I told the person I was staying with to go to work. They didn't work far away, so I figured if something changed that I could call them. My appetite was not only back, but I felt like I was making up for lost time. It was frustrating, though, because of two things: one, I was so hungry that I had to be careful standing up too fast and becoming light headed, and two, my head was a bit foggy so I could get as far as knowing that I was hungry and then would stand in front of the fridge for 10 minutes without making progress. I'm indecisive as it is, so foggy brain + indecisive = no good. However, within about 3 hours I had eaten peanut butter toast, part of a quesadilla, a taco, snack mix, peanuts, and a couple cookies. Then the person I was staying with got home from work and I had lunch with them. I seriously could not stop eating the entire day. I loved having an appetite again! But since I was still feeling off and my body was feeling drained, we agreed I should stay one more night just to make sure that I was okay.

The day after though was not as great. I was glad I stayed. I woke up a bit nauseous and off balanced. It did get a bit better through the day. But I was super bummed that I didn't have that general appetite any more. By the end of the afternoon I was feeling much better than when I woke up. I had a few friends meeting to get some coffee and was feeling well enough to drive myself to join them. 

I will say that I felt off for the remainder of the week, but not too bad. I was able to return to work and take a day trip to see a play which had been planned for a while. Of course, things may not be the same every treatment, but I do have a general idea. I have not seen a big difference in my symptoms quite yet, but I am very hopeful I will in the next month or so. 

Nikki De