THE REMICADE DIARIES: PART 1

Two Friday's ago I had my very first Remicade infusion! If you read my post about switching to Remicade before, you know that this was something that I thought about for a long time and a decision that I was unsure about making. I took the plunge though and went for it. I ended up taking a half day from work because my glorious idea of working from the infusion chair was promptly shut down when I realized my first treatment would most likely be the worst and most tiring. Cool.

Upon my arrival at the Gastro I went through the usual motions and sat down with my doctor so that he could verify that this was, in fact, the option I had chosen. The answer was obviously yes (or at least obviously to me) since I have spent the past months suffering ridiculously with no relief in sight. Despite my certainty, he still offered me an all expenses paid journey down the experimental drug route. I have been there before and I do not feel like going there again. I am sticking with Remicade. Tried and true. Side effects know. Countless studies completed. 

After I shut that down really quickly I went on my merry way up to the infusion center and snagged a room with this friendly looking lady who was actually working from the room which was encouraging. We chatted while my favorite nurse checked my vitals and started my IV. 

Honestly, what follows ended up kind of sucking. But not as bad as I thought. I developed an injection site reaction which caused a my entire left are to get itchy and bright red. Then it turned into an achey feeling accompanied by hives. Things are just heating up. I started having this weird throat/cough situation which made me sound like a man for a few days afterwards. The worst lasting problem is that all of my joints on my left arm (where my IV was) are so still and achey they even wake me up in the middle of this night. Lucky me, this migrated up to my shoulder and back (all on my left side). I am a little concerned that this hasn't subsided nearly two weeks later. 

I fell asleep about 40 minutes into the IV. By fell asleep I mean passed out to the point where I was probably drooling and my favorite nurse had to sweetly wake me up at the end of the drip. Even then I literally could not keep my eyes open. Driving home was a huge struggle because I was ready to get back in bed and snooze away. That night I barely left my bed besides to eat a small dinner. Saturday I slept for most of the day and the same goes for Sunday. No matter how much I slept it was never enough. Monday was the first day I felt at least decently back to normal but I didn't feel fully back into action until Wednesday. This actually was lucky because on Thursday I left for a work trip that lasted through Sunday, #nodaysoff. Fun fact: I was supposed to wear a medical mask on these flights but I didn't because I am a horrible patient and now I have a cold that won't kick. I deserve it. I know.

As far as feeling better.... I have to say I haven't seen a dramatic improvement yet (which makes sense) but I did avoid feeling super sick while on my work trip. This is definitely an improvement considering every time I travel I get seriously ill. The side effects still seem to be bothering me though which I am not a fan of. I know it seems trivial that I am complaining about these seemingly harmless side effects but I am just being full disclosure with you all because that is what I would like to hear before I went in for this. Plus, I deserve to bitch a little don't I? I'm hoping that this round two will not upset my body so much and I hope that my gastro can explain this weird swollen joints/pain situation going on. 

Has anyone else ever experienced any of these side effects? I know I'm not alone on the side effect piece of this but I do know that everyone reacts differently so who knows! I have to give a big thank you to all of the people (both that I know and those who have just seen my story online) that chose to reach out and give me some well wishes and words of encouragement. To "regular" people, Remicade seems like just another medicine that you add to your routine but to Spoonies it means having a new chance at living the life you want to live. With that chance also comes the fear that it won't work and the doubt of what you will do next if it plays out that way. This is why our community needs to stick together. We are the best rocks for each other to lean on!


Let me know about your experience with Remicade or just your biologic journey in general! I always love to hear other's stories!


This Friday is my second loading dose and then I will have my next in six weeks!


​xx