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Regular Member

Date Joined Nov 2007
Total Posts : 30
   Posted 11/4/2007 8:51 AM (GMT -6)   
I am so new to this whole thing but the more that I read the posts the more I want to know about Remicade.  I started it in July of this year, and I am sad to say that I am clueless when it comes to what can be done with it.  sad I feel like I am just along for the ride and I want more control of the whole process. 
        Does anyone else feel like at about week 6-7 post infusion the progress that was happening is starting to go backwards?  Can you change it so you get a infusion sooner? Any info that I can get on others experiances with this drug good and bad are welcome.  Info on any side effects that anyone has had will be helful also.  Now maybe I won't feel like I am going crazy!  I never thought that Crohn's was this complicated.  All I hear at work is "It's just Crohn's you can live with it."  And I work at a hospital confused But as I am finding out it is not just Crohn's. There is so much to it. Everything has just happened so fast that i feel like i need more control. Is this an odd feeling or do other people feel this way? 
         I know that this should be up to my doctor to help me with but for so long I felt that I was going crazy.  I only have family practice docs and general surgeons where I live so I have been misdiagnosed for so long, and I am not one to go to the docs too often, that I am afraid to marked as a "frequent flyer". When I call the GI's office i get the oh its you again feeling from them. So now I just try to go at it on my own.  so I will take all the help and advice I can get!
   One more quick question when should i not get my remicade infusion? Will the common cold affect my response to remicade.
    Thanks for reading :-)
         Confused and sad

Post Edited (april07) : 11/4/2007 7:06:31 AM (GMT-7)

New Member

Date Joined Nov 2007
Total Posts : 12
   Posted 11/4/2007 9:59 AM (GMT -6)   
It sounds like you should be getting more advice from your remicade provider.  I was on remicade for only four doses.  That's how much time they gave it to work for me.  When there was no change they took me off(to find out later my problem was a stricture).  But, my experience while going for the infusions was one of total support.  A nurse was present to answer any questions. Specific info. was given about when not to come in. (There was a call center for this info) Fever, infections, and I think you were suppose to call first if you didn't feel well.  People I met there were on more frequent doses than I.  They told me of one fellow that comes once a year.  Guess it depends on you.  I hope you can find a GI to help.  I find my family Dr. just does not have the information.

Regular Member

Date Joined Nov 2007
Total Posts : 30
   Posted 11/4/2007 10:25 AM (GMT -6)   
I have a stricture as well maybe that is why I start to feel like I do 6-7 weeks out. I guess I just have to be a pain in the you know what . Then maybe I will get some help and some answers! thanks

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 11/4/2007 11:09 AM (GMT -6)   
Hi April, I have been on Remicade for over 2 years and I an doing fine. You can go to Remicade's
web-site to read about the med. Thats how I leaned about Remicade.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007

Forum Moderator

Date Joined Nov 2003
Total Posts : 7054
   Posted 11/5/2007 5:12 PM (GMT -6)   
My every 8 week schedule of Remicade wasn't "lasting" the full 8 weeks, meaning my symptoms became bad prior to the infusion time. I noticed that my symptoms seemed to return in full force about 10 days prior to infusion time. My GI and rhemy then decided to try me on an every 6 week schedule. That worked somewhat but I still was having a lot of break through symptoms. I was on a dose of 5 mg/kg at that time. So they upped the dose to 6 mg/kg every 6 weeks. They kept inching the dose upward until I was on 7.5 mg/kg every 6 weeks. I stayed on that dose and schedule for over 2 years.

I hope this helps you. I am not the only one here that had their infusions more often than every 8 weeks. Some people here have been on an every 4 week schedule. Remicade dosage and schedule can be motified to help you. Depending on your insurance coverage, the prescribing doctor might need to justify to them your need for more frequent infusions.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?

Regular Member

Date Joined Nov 2007
Total Posts : 30
   Posted 11/5/2007 6:14 PM (GMT -6)   
Thank you all so much for the good advice. I will talk with my GI and rhemy to see if I can do the same.
Thanks again!!!

Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 11/5/2007 7:00 PM (GMT -6)   
April, just because you have a stricture doesn't mean the Remicade won't work for you. If your stricture is from scar tissue, it won't work, but if your stricture is from inflammation it "should" help you. If you're finding that it's not lasting the full time between infustions, you can have the infusions moved closer together. Just be aware, if the infusions get closer and closer, and you need higher doses, it usually means your body has built antibodies to the medication and is fighting it.
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 

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