Been thinking about Remicade…

I have been thinking about Remicade ( a lot lately. I know a lot of people who are on it. I have done some projects with Jannsen on this particular medication. And I was on it a while ago so I can relate to the things people say about the infusion process, etc.

There was also something Sean Ahrens said on episode 3 of the IBD Roundtable  about how he was only 14 or 15 when his parents made the decision to put him on remicade. And as far as I know, it has been over a decade and remicade continues to be in his life. While some didn’t agree, Sean made the comment that he was glad his parents were the ones responsible for putting him on the drug. Sometimes ignorance is bliss. And now, it has been his maintence drug for so long there would be no reason to go off of it.

I was 14 when I began remicade. I remember being so sick in the hospital and having my parents, gastrointerologist and surgeon surrounding my bed. They were all talking and I was pretty much listening. When I heard my GI say that there was one other medication we could try before I went into surgery, I know my parents’ eyes widened. My doctor went on to say that the medication hadn’t been really used for ulcerative colitis patients but when it works, patients refer to it as the miracle drug. She also said that the only reason she was even allowing me to try this medication was because I was also on 6mp.

I remember the man who later became one of my surgeons tell me that he was always there if I needed him. He was very kind and wished me well as he walked out of my hospital room.

I was told I would need benedryl before the infusion which I was fine with. A number of hours later after the medicine was fully in my system, I felt like a completely different person. My parents looked at me with hesitation seeing as they had no idea what to expect from me physically. I felt amazing. I kind of thought I was dreaming. I went from having a surgical consultation to remove my large intestine to feeling like I did prior to ulcerative colitis.

It was at that point that I should have known there was a catch. I never knew about side effects other than the medication was made from mice which was why I needed the benedryl. When I asked about the side effects, they said there were some but none that I needed to concern myself with. Once I confirmed remicade wouldn’t cause me to look like I did while I was on prednisone, my 14 year old mind had no other questions or reservations.

I was discharged from the hospital shortly after my first infusion feeling like a new person. I was me again and I had no idea how I did this miraculous turn around.

I couldn’t imagine having to make the decision about whether to try a medication like Remicade or have a major operation. In many ways, I am glad that I was only 14  years old when I was put on this drug. I do believe in so much of this disease, given that there aren’t a ton of options, that ignorance is most certainly bliss.




  • jtbear3ca

    I did Remicade from around 19 to 26. I did not have the drastic improvement so many people did but I think it may have been because it was post surgery and it was to keep me in a stable state of health. I do know that i would always flare 1 week before the infusion. Recently I had a doctor think about putting me back on Remicade but they are worried I developed anti-bodies to it.

  • A Guy With Crohn’s

    I was on Remi for 1 year. After my first couple of infusions, I would have so much energy I wouldn’t know what to do with myself. However, it never really helped me with my IBD issues. Around the year mark, I was getting really bad knee pains a day after my infusions. Dr. decided to take me off.

    I know that many people have had success though so even though it didn’t work for me, I would never talk bad about it. Everyone is different. Sean is an amazing person and I am glad that he has had a positive experience with it.

    • Marisa Lauren

      Didn’t know you were on Remicade. Fingers crossed the LDN keeps working the way it is :) knock!
      I don’t know Sean personally at all. What he said on the roundtable was just something I haven’t forgotten.