Don't want to give up on Remicade!

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Alford
New Member


Date Joined Nov 2009
Total Posts : 8
   Posted 11/30/2009 2:46 PM (GMT -7)   
I've been battling Crohn's Colitis for the past 10 years.  The only thing that has ever knocked me into remission has been Remicade (my miracle drug.)  Unfortunately I have a history of letting my health coverage expire when I have been in remission.  So over the last 10 years I have gotten 3 bad flares which remicade cleared up every time, but in between, i  have discontinued Remicade use every time.  So here I am with my 4th relapse of a chrohns flare.  I've been bleeding for  6 months straight, and my blood count is very low.  I restarted Remicade again but it hasn't been as effective this time.  I took the first two 300mg loading doses, but didn't notice a difference, so my GI allowed me to up the third loading dose to the full 600mg.  I did notice it trying to work at first (stools started forming, and less blood loss) but the flare took back over.  My next dose is in less than two weeks but my GI Doc says that its not the medicine for me anymore.  I disagree, and don't want to give up on Remicade yet!  I asked and recieved a prescription for asacol, hoping that it assists the Remicade if the doc somehow allows me another infusion.

I'm in the hospital now, and I just finished my latest colonoscopy.  The doc  said it was the worst colon he has seen, like a bomb went off in me, but I have healed 3 times now from being this bad with Remicade.

Does anyone have any thoughts on how I can talk my doc into not cancelling my next Remicade infusion?  Have there been any studies where Remicade hasn't worked instantly?  Is there any ways to detect antibodies or an immunity to Remicade?

Thanks!

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 11/30/2009 3:08 PM (GMT -7)   
Why did you stop the Remicade? Stopping increases the chance of developing antibodies.

I would be inclined to listen to my doctor, especially if I had the worst colon he's ever seen.

take care
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


BellsforHer
Regular Member


Date Joined Oct 2005
Total Posts : 429
   Posted 11/30/2009 3:23 PM (GMT -7)   
I'm sorry to hear this Alford. Are you hospitalized right now or did you do an outpatient colonoscopy? What has your doctor mentioned trying if he thinks remicade is done?

Alford
New Member


Date Joined Nov 2009
Total Posts : 8
   Posted 11/30/2009 4:30 PM (GMT -7)   
Thanks for the replies. Yes, I'm hospitalized right now. I went to the ER on the 25th because my blood pressure was really low (80 over 40) and my Hemo count was 8, so they gave me 2 units of blood transfusion and sent me home. I woke up the next morning at 4:00am shaking uncontrollably, short of breath, feeling extremely cold even though my room was 80 degrees F. So I rushed back to the ER and I had a 103 temperature fever which lasted the last few days but is finally back to normal now. I've been hospitalized since, getting sipro and flagyl and tylenol, a colonoscopy, and finally 1600mg of asacol 3x a day. They want to cut my colon out but I say no, as it has healed three times before. The GI did mention other drugs such as humira, but I don't want to give up on remicade yet. I could feel the last dose working, just not enough. Colonoscopy was today...

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 12/1/2009 6:05 AM (GMT -7)   
I also stop remicade when I am in remission, it usually only take one dose to do so. This is because when it first came out it was so expensive it was all the NHS would budget for and in fact that was the NICE guideline for use until about a month or so ago.
So I've had breaks of up to 3 years since taking it! I take methotrexate with it though, my doctor said that without the methotrexate I wouldn't be able to take it like this as the methotrexate help reduce the build up of antibodies and lessens the risk of reacting to the remicade and can also extend the effectiveness of it. Thats why a lot of doctors recommend taking remicade along with an immunosuppressant such as methotrexate or Immuran. Maybe its worth asking about that?
The last time I got sick the remicade didn't take straight away and it took another dose along with a more potent dose of methotrexate to boost me back into remission (been 9 months and still going strong!)
 
 

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