Months ago I started to take the medication Remicade for my Crohn’s disease. In that post, I explain a bit about what Remicade is so if you want to read that first, my post on that can be found here. It's been months now since taking it so I thought I should write an update since something had happened.
(TW// Medical, Allergies)
On March 29th I was getting my 4th Remicade infusion done. While the first 3 doses went great and the medication was helping my symptoms a lot, unfortunately, during my 4th dosage, I had an allergic reaction and went into anaphylactic shock. Anyone that has dealt with this kind of allergic reaction before knows that this is an extremely scary experience, especially when it's the first time and you are completely unprepared for it.
About ten minutes into my infusion, I started to get a little dizzy, which at first I thought was the Benadryl kicking in because that is one of the precautionary medications they give beforehand. However, about a minute or so after feeling dizzy I started feeling very warm in my face and arms. And suddenly I couldn’t breathe. It was so hard to let air in as if I was being choked and that's when panic mode had kicked in. There wasn’t a nurse right next to me so I had to try to yell out for one to come as there was no panic button near me and for some reason, the other patients in the room with me (who could obviously see I was freaking out) didn’t even try to get help either. I managed to call for help and the team of nurses that were in the infusion center rushed around me. They stopped the medication, and already by that point, I was close to passing out while also throwing up. They gave me an Epipen and within seconds I was able to breathe better but also was overcome with uncontrollable shaking (a side effect of the epinephrine). I was rushed into the ER where they gave me some more medication to help with the reaction and I was monitored for an hour before being allowed to go home.
Honestly, it took me over a week to get past the experience. It was incredibly scary but also stressful because now, I have to try another medication. So while more trial and error is ahead of me for a Crohn's treatment, I’m also trying to stay positive about the whole situation. See, when I was doing my own research about the medication and asking questions to my doctor and nurses, at no point did any of them tell me that it is common to become allergic to Remicade between the 3rd and 5th doses. NO ONE decided that it was important information for me to know, even when I asked a bunch of questions before they even started giving me my treatment. The main reason I wanted to write this post is so that anyone about to start this medication knows about the possible risks. No one expects to become allergic after you’ve already had the medication a few times, so that's what I thought. “I’ve had 3 infusions so far and no bad side effects so this is going to work for me” only to find out that between your 3rd and 5th infusion you can become allergic and have a serious reaction. I was not told any of this until it was already happening to me. I know the probability of this reaching someone else about to start taking Remicade is small, but I want this warning out there. I wish I had known this going into my treatment. While it wouldn’t have prevented the reaction from happening to start with I could have been warned about the possibility and simply being mentally prepared for it would have helped a lot from a trauma standpoint.
It’s safe to say that Remicade won’t work for me anymore but I know there are other options out there, the next treatment lined up is the medication Stelara but that won’t start till the end of May. For now, I’m just trying to deal with what happened and manage my symptoms since those are popping back up from having to come off of Remicade. I think when it gets closer to my appointment I’ll do the same I did with my Remicade experience. So expect a few posts on my experience with that.
Thanks for reading, I needed to talk about this to help get over it a bit. Honestly, I’m still shaken a bit even though it’s been weeks. My anxiety and stress have been high lately so I was taking some time to work through it and while it still bothers me I’m in a better place now to move forward. Thanks to everyone who was there for me, you are all amazing and it means so much. I’ll talk to you in my next post. Cheers!
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