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Remicade time frame?

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Posted 4/23/2009 5:05 PM (GMT 0)
My daughter may still have to resort to Remicade at some point if things don't work out with her current treatment. I've been trying to gather some information through here mostly. I'm familiar with the problem of building up anti-bodies that will result in having to terminate use. It seems from what I've read, most only get about 1-2 yrs. before this starts to happen. 

Is there anyone who's had longterm success with Remicade? Is my understanding typical, or is it possible to get years of benefit from this drug? 

Tom.

Posted 4/23/2009 6:05 PM (GMT 0)
I have just started Remicade (2 treatments so far), but I know from speaking with the nurse who administers it to me that she has patients who have been on it for several years, far longer than 1-2. Everyone is different; no 2 Crohn's sufferers seem to be the same or have the same results with meds. Hope that helps!
Posted 4/23/2009 6:14 PM (GMT 0)
I believe Teddybearwieser was on it for over 5-6 years. And I have seen others who have been on it even longer. Many have had great success with this med. Hopefully they will be along soon.
Posted 4/23/2009 6:16 PM (GMT 0)
I'm doing well at 2 years. Hope that it keeps going for a lot longer.
Posted 4/23/2009 10:37 PM (GMT 0)
I took remicade for 6 & 1/2 years. For the last 9 months of that time frame it started to lose it's effectiveness on me and it took me that long to figure it out. I spent most of my Remicade life taking the 10mg/kg dose and had it as frequently as every 5 weeks for a long time (2 years?) and as stretched out as every 8 weeks, but not for very long. Usually I was getting infusions every 6 weeks.
I have since switched to Humira and have been on that for 9 months and so far so good.
Posted 4/24/2009 12:44 PM (GMT 0)
Tom,
I have the same worries as you. Remicade is next on the list for me.
My Imuran seemed to work for 3 weeks tops. I am progressively getting worse. My GI is on vacation though so I don't go see him for 2 weeks. But He has told me has had patients that have been on Remicade for many years, so I am trying to stay positive about it.
Right now I am wondering how long it is going to take to even get started on Remi as I have to be preapproved by my insurance but my GI has to fill out the paperwork....

Tanya
Posted 4/25/2009 12:29 AM (GMT 0)

Hi Tanya,

Hopefully Remicade will be the best alternative for you if indeed you decide to go that route. Have you been on Imuran long enough to get a full effect? Are you sure the clinical dose is enough for you? I'm just thinking that you want to make sure the Imuran is definitely not working before opting for alternatives. 

Tom.

Posted 4/25/2009 1:05 AM (GMT 0)
I have been on it for 4 1/2 yrs.  Still going stong!  I still go every 8 weeks but have increased my dose...it's not doubled, but just taking half more.   And I'm praying it doesn't stop working anytime soon!  I'm prone to fistulas and don't know what I'm going to do when it does stop working.

Posted 4/25/2009 3:42 AM (GMT 0)
Tom,
I have been on 150mg of Imuran for 10 weeks. I felt pretty good weeks 4-6 then slowly got worse. I am worse now than when I started the imuran. Prednisone has done nothing for me so I doubt a burst of that will reallly work either. I have come to terms with trying Remicade. It is a bit disheartening as I had high hopes of acheiving remission with my surgery like I did with my first surgery, then hopes for it with the Imuran. I am at a point that I just want this to be done so I will go with the big guns. 1 1/2 years of flaring plus my aweful surgery experience mixed in there, has beat me down.

Tanya
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