med schedule

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.  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 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)

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

April,
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.

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.