Remicade was the first heavy-hitting drug I was put on to treat my Crohn's disease. I was on a pretty high dose of Prednisone along with Imuran. My first treatment made me feel like a brand new person. My symptoms completely went away, my energy came back, and I started to put on a few pounds. After several weeks, however, they started to come back so I had to schedule my next infusion soon. I rode the elevator with my mother to the fourth floor of the hospital to the infusion center. They got me comfortable and got the I.V. started with much more ease than normal. The nurse brought in the bag and hooked it up to my line and walked back out of the room. I barely had more than a few cc's of Remicade when my chest became very tight and my vision started to tunnel. In less than a minute I was no longer able to breathe. They had given me Benadryl before they started the infusion, but I was still having a severe allergic reaction to the Remicade. My blood pressure bottomed out and the nurse frantically pushed buttons on the pumps as another put an oxygen mask over my face. It was one of the scariest moments of my life. One second I was fine and the next I could not take in a breath. They were able to stabilize me and sent me home a few hours later. The doctor I was seeing at that time wanted me to try the infusion one more time a few weeks later.
That next infusion triggered an even quicker allergic response and Remicade was forever checked off the list of possible treatments for my Crohn's disease. I know many people that thrive on Remicade and it has done wonders for their symptoms, keeping them in remission for years on end. My main point in this post is that there are so many different treatments and medications for Crohn's disease and new ones are coming out all of the time. What puts one of us into remission could cause a near fatal reaction in another. We all react differently and our Crohn's varies in intensity from month to month and from person to person. When asking others about how it will be to receive a certain medication make sure you ask a wide variety and get many different opinions before you decide. Ultimately, put that trust in yourself and go with your gut.
Same thing happened to me and it is something I DON'T want to experience again. Since then, I was on the open label Humira study at Univ. of Chicago. It did wonders for me for 6 years and then had a serious flare last year and just stopped working. I am on Cimzia now and it works, but not as good as the Humira did. I am currently in a flare now and will be getting put on some Prednisone today unfortunately.
ReplyDeleteThey are looking to put me on Cimzia in case my Humira stops working, but the insurance doesn't want to cover it. I'm sorry to hear that you've got to go back on prednisone. I hate that medication. It makes me feel like I'm going insane. I was on it the last time for a few years, but finally got to taper off of it earlier this spring. Good luck to you and keep fightin'.
ReplyDeleteI was part of the clinical study to assess the effectiveness of infliximab (Remicade) in the UK in the 90's. It is the only drug that has ever worked for me, before that I had never been in remission with the crohns. It is a shame that one of the main side effects is severe allergic reaction. The last time I had it was to calm my inflamation enough to operate on me after spending years waiting for the crohns to calm down with conventional treatments.
ReplyDeleteI am not having any treatments at the moment, my liver began to be affected by my meds so they had to be stopped. The doctors are going to start me on infliximab infusions when my crohns next flares up, I will be on that indefinately then. Well until I react to it. :)
Sam, I applaud you for helping with the Remicade trials. Your participation has ultimately help thousands of people. I hope that your infusions go without incident and that you can stay symptom free for as long as possible.
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