Second Remicade Treatment

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New Member

Date Joined Jun 2009
Total Posts : 9
   Posted 12/8/2009 5:03 PM (GMT -7)   
Hi All...

I am scheduled for my second Remi infusion tomorrow. I had my first the day before Thanksgiving and everything went great - hardly even got sleepy from the benedryl. I have had a real decrease in my trips to the bathroom. The only thing that I have noticed is a sore throat, occasional sneezing and a slight runny nose. Kind of feels like the beginning of a cold. So here is my question - should I hold off on my second treatment? Is this something to worry about OR is this just a side effect? Anyone have any thoughts?

Regular Member

Date Joined Oct 2009
Total Posts : 117
   Posted 12/8/2009 5:42 PM (GMT -7)   
From what I've read those things you are feeling could quite possibly be a side affect of the med itself.

I don't mean to hi-jack this thread but, I'm curious, is it common to be on Remicade for life? My doc tells me that once I start I will be receiving infusions every 8 weeks for the rest of my life.

Also, I'm curious how much of a decrease you found in your trips to the bathroom and whether you have been able to alter your diet at all to include foods that used to bother you before Remicade?
- Diagnosed Nov 08' but undiagnosed for 13 years prior with no major problems
- First major flare Aug-Sep 09 - I attribute it to intolerance to meds and crappy GI
- Perianal abscess - EUA with drainage and Seton put in
- Meds: Waiting for Remicade IV to start next month

New Member

Date Joined Jun 2009
Total Posts : 9
   Posted 12/8/2009 6:11 PM (GMT -7)   
that's kind of what I read about side effects. I mostly just wanted to confirm with everyone else. My sister is a physician and a pharmacist and that is what she thought too.

I think that you are on Remicade infusions for a while is my understanding. It sounded like if you are doing well you can space the treatments out or push them closer together based of whatever it takes to get you into and keep you in remission. I'm like a lot of other people - I am willing to put up with it as long as it works and so far it has.

So for background.... I will also admit that I was never very good at altering my diet to accommodate my disease. I mostly lived in denial until I got to the point early this summer where I had a stricture so tight my GI couldn't even use the pediatric scope to get past it. He thought he perfed it and we had all kinds of drama and that got my attention - finally. I have been very compliant since then. I went on a 8 week course of prednisone and lialda. We added immuran to it and that seemed to work but I just couldn't take the side effects of pred (mood swings, weight gain - ugh) and begged to get off it. But that didn't really seem to last very long. So when faced with returning to prednisone, I decided to give the Remicade a try.

I am down to about 4, maybe 5 BMs in the morning - I have about a 2 hour window in the morning. Sometimes more, sometimes less. Intake makes a difference for me. Morning was always my bathroom time. One thing I have noticed is that red wine is no good. White is ok for some reason. (It IS the holiday party season, ya'll) I've pretty much cut that out except on the weekend - as much as for the calories as anything else.

Sorry for writing you back a book.

Regular Member

Date Joined Apr 2009
Total Posts : 55
   Posted 12/17/2009 8:42 AM (GMT -7)   
I go for my third infusion next week and I am down to 1-4 a day, but most days it is just twice a day. This is a welcome relief from (at my worst) 10+ times a day. Before I started the Remicade I was going 6-10 times a day. I still have energy and am feeling almost normal again.

Regular Member

Date Joined Oct 2005
Total Posts : 429
   Posted 12/17/2009 8:52 AM (GMT -7)   
Remicade has definitely decreased my trips to the bathroom and when I was on it before I was eating a lot of what I wanted. I'm going to be much more careful this time around though and still try and control this disease with diet. For me when I'm feeling good I get a little cocky and think I can eat or drink what I want lol, I've gotten over that though.
35 year old Female

Entocort EC 9mg per day and Remicade

Tried Remicade 2 yrs ago for about a year and a half and loved it, got off it due to costs, tried Humira and it just didn't work for me so now back on Remicade.

~Trying to avoid surgery as long as possible~

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