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03-20-2012, 12:09 PM   #1
dgg
 
Join Date: Feb 2011

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How long on remicade?

Hello,
I'm curious to see if anyone who has been on remicade for a while and is so if you've developed any resistance to it? I've been on it for 2 years and it seems to be losing its effectiveness. I can tell by my fistula drainage and discomfort which gets worse towards the end of my remicade cycle. My GI recommended a blood test right before I was due for my next infusion (8 weeks out) and it showed I had no trace of remi left in me. She explained that your body can start becoming resistant and for this reason added imuran and I'll also be on remicade now at the higher dosage, 10 ml, every 4 weeks. I still have a high horseshoe fistula that drains and won't heal up so the plan is to try and help heal or shrink it so that we can try a plug procedure. Doctor also said that if remicade stops working the next step would be to try Humira but we'll see since I'm not there yet.
03-20-2012, 04:20 PM   #2
shamrock15
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Join Date: Apr 2011
Location: ottawa, Ontario

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I have been on remicade 3.5 years now, and it is still working like a charm for me (knock on wood immediately!). If anything it seems like mine took about two years and a couple other changes to get to full effectiveness. Fortunate to be in about the best shape I have been in for about 20 years. Hopefully this is only a minor blip for you that will sort out shortly.
04-27-2012, 01:22 AM   #3
dresslma
New Member
 
Join Date: Apr 2012
Location: Cincinnati, Ohio
I have been on Remicade for 6.5 years. Was diagnosed with Crohn's at 9 and went on medication after medication until my doctor recommended this when I was 17. Now approaching my 24th birthday and it seems to be wearing off. I have them every 8 weeks but it seems like the 5th or 6th week i am having cramping and an increased rate of going to the bathroom. I have an appointment with my GI to possibly increase the rate to every 6 weeks and see how that goes. I have never had any problems with this. No reactions or side effects. It seems like after about the 7th day of a treatment I am 100% again and feel great. I would recommend this option to anyone who hasn't tried it!
04-27-2012, 06:33 AM   #4
2thFairy
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Join Date: Sep 2010
Location: Dallas, Texas

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I was only on Remicade for a year and it started losing its effectiveness for me after 4 months. The dose was doubled and interval decreased, but it just didn't work for me.
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Total colectomy with ileostomy featuring Sideshow Bob since January 2012

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04-27-2012, 09:09 AM   #5
dgg
 
Join Date: Feb 2011

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Did any of your doctors suggest adding imuran to prevent the remicade from losing effectiveness? Imuran was recently added for me and I've been on it for almost 8 weeks now. I know the doctors are checking my remicade levels in my blood (right before I get my infusion) to see if it is working. When remicade levels were checked after 8 weeks I had no trace of remicade left in my blood so doctors increased my infusions to every 4 weeks and doubled the dosage (10 ml). I am waiting to get the bloodwork results soon (they were taken a week ago). My fistula is still an issue but I was also told that I need to wait a little longer for imuran to reach its full effectiveness (it's only been 8 weeks so far). Thanks for the feedback!
04-27-2012, 10:39 AM   #6
Mom2oneboy
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Join Date: Mar 2012
Location: I'm a southern girl
Will be following this post as my son's doctor is recommending Remicade and also MTX in hopes that he won't develop antibodies to the Remi. Thanks for sharing your experience!
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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
06-21-2012, 11:32 PM   #7
eclektick
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Join Date: Oct 2007
Location: Calgary, Alberta
I just finished my 37th infusion, up from 8 vials every 8 weeks to 7 every four now. Specialist had me add imuran back in about a year ago and just had tests that are showing large amounts of the meds in my system at the four week time period. I have found that the imuran has helped with the things the remi was SUPPOSED to have dealt with by itself. Best of luck!
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7 vials of Remicaide every 4 weeks with 2 vials of steriod, 100 mg of Imuran daily, add a couple of Dilauded to taste.
01-31-2013, 06:21 AM   #8
stoltzfusgreen
 
Join Date: Oct 2011
I have been on Remicade about 8 years now. 6 vials every 6 weeks. Had to double about 4 years ago due to break through symptoms. Am symptom free, but have to premedicate with solu-cortef because of slight allergic response at infusion site.
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