Remi Newbie

Hi All,

I started my first remicade dose on 9/22 while in the midst of a flare...and the next day I immediately felt better from where I was (no blood, formed bms, urgency only in the morning) and I felt pretty good until yesterday. My next infusion is this coming monday.

My question to you is this typical? I know everyone is different but the reappearance of blood and some unformed stools into my day is terrifying me a bit. I have a hunch that it's between 1. my body needs to build up to the therapeutic level and 2. i'm guessing a few people may actually feel like crap before their next infusion (i hope this isn't the case?!?!).

Any input would be great. I'm going up to visit my doc in Boston end of November and just haven't felt like all of my questions are answered with my day to day docs in PA. I'd love to hear about your experiences. I've heard some people say they feel 100% better on day 0 and this is a little discouraging to me compared to my experience thus far. I definitely felt better, like 80% but not 100%.

Thanks for sharing your story!

Post Edited (blonde0724) : 10/10/2014 9:04:03 AM (GMT-6)

Like you, I received Remicade during a bad flare. Like you, it immediately turned my symptoms around. I wouldn't worry too much about your symptoms right now. See what it's like after you get your next infusion on Monday. I was on Remicade for 2.5 years, and I don't know that I ever felt back to 100% when I was on it - more like 80-90%.

I rarely got blood work to check on anything related to Remicade. My doctor at Mayo never mentioned anything about it, so I assumed, perhaps wrongly, that it wasn't necessary. As the efficacy of the medicine began to wane, I increased my dosing schedule to every ~6 weeks. As far as moving it up or back a few days, I had a window of about a week where I was able to schedule my appointment. If I was outside that window, I needed a doctor's authorization.

Remicade has been around for over 15 years, so it is a well-studied, widely-prescribed drug, FYI. I hope this helps.

I'm new to this forum but not new to UC. I've been on remicade for a little over 5 years and saw immediate results. After my first infusion my cramps disappeared and then I progressively got better after several infusions. I was not actively flaring but was not well controlled when I started remicade. I had a vicious flare Dec/Jan of this past year requiring hospitalization. My GI doc moved up my infusion and then changed me from 8 weeks to 6 weeks and added prednisone taper for 8 weeks and rowasa. It took me 3-4 weeks to not feel miserable. As far as lab work, my doc sends me rx in the mail every 3-4 months. I don't have the energy I had pre-remicade but that's ok with me. My cramps are horrible when I'm not well controlled or flaring. When I was every 8 weeks, sometimes week 7 reminded me of why I was on remicade however not with every 6 weeks. Hope this info helps or encourages you. Good luck with infusion #2.

I've been in remission since April 2006 with Remicade, 5 mg/kg every 8 weeks.