When you started remicade how often were your infusions?

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acrobat
Regular Member


Date Joined Oct 2006
Total Posts : 46
   Posted 11/27/2007 9:09 PM (GMT -7)   
I started remicade today and I have an appointment again in two weeks for another infusion. My doctor's office called me today to make an appointment for three weeks from now. The nurse who did the infusion said that it is recommended that with fistulizing crohn's infusions are two weeks after the first and then 4 weeks or so after that for the third. And if you don't have that then the second infusion is 6 or 8 weeks after the first. But it is also up to the doctor and it can be done either way.
 
So I am wondering how people here had their infusions? I don't have any fistulas. My doctor seems to take a longer approach to doing things and I feel like when I call I should kind of demand that I have the next infusion in two weeks instead of waiting 8. I have been patient with this guy for the two years I have seen him, trying different combinations of things and I am thinking it's time I need to say I would like to do things in a bit of a more aggressive fashion.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 11/27/2007 11:20 PM (GMT -7)   

I completely understand your frustration, but now is not the time to lose your patience.  I have been on remicade for 3 years now every 3-4 weeks at the max dosage.  When I first started, I received my infusions every 2 months.  This worked for a little while, but then I began to develop antibodies toward it.  My doc upped the dosage to the max dosage and eventually changed my infusions to every month.  The remicade now only works for about 2 weeks dispite adding 6-mp and now methotrexate to it.  I tried changing over to Humira, but got very sick and had to go back.(Very unusual) Now, I have no other medicine options after remicade and I can not up the dosage or frequency of the infusions. I am the only one at my hospital getting this large of a dose every month.

  My point in all of this is that you need to let the doctor extend the remicade out as far as he can.  Just like pain medication, we grow immune to its effects and the potency that it carries.  I wish that i could stall my infusions out more in order to increase my time that I will be able to use this medicine in the future.  Remicade is not a light drug and you need to realize that your doctor knows what he is doing.  All to often we want answers and results right now.  This disease is a dreadful one with no quick solutions.  There is a reason that there is not a cure yet and that is due to so little known about it.  Be patient and let the medicine do it's intended purpose.  The best thing that you can do, is to be honest with your doctor and let him know exactly how you are doing. Please remember that this medicine carries some extreme side effects, and the less that you can put into your body the better.


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/28/2007 7:23 AM (GMT -7)   
There's a lot to be said for a loading dose though, which is what Acrobat is talking about. It wouldn't hurt to ask your doctor about getting the loading dose. Let him know you really want to try to get this under control sooner rather than later, and maybe he'll give you a good reason for not doing it, but at least talk to him about it.
Judy
Crohn's Disease   
 
 
 


Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 11/29/2007 7:27 PM (GMT -7)   
I had the loading doses both the first time I started Remicade and this time. It seemed to really get it under control and I had pain relief after the second dose. My doctor and the hospital that I get the treatments at won't do it any other way then to have the loading doses first. I got sick and had to go on antibiotics the first time after the second infusion..so I had to wait the length of the antibiotics and then an additional 2 weeks THEN I had to RESTART the loading doses. I actually didn't realize there was another option. I think you have to have a dr that you TRUST and go with what he thinks is best! GOOD LUCK!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks

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