Remicade it is!!!

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Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 4/6/2009 7:10 AM (GMT -6)   
Hi all, Have just come back from seeing my consultant who has decided to try me on Remicade for crohn's and to hopefully close up this fistula will be starting it next week so excited in one way but also a bit apprehensive i just hope it will work. Has anyone been on this to close up fistula's and did it work for you? It would be great to hear your experiences on it  thanks for your time Bev x

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 4/6/2009 8:08 AM (GMT -6)   
I haven't used it myself, but I know many on the board with fistula's have had pretty good success with it. Good luck and I hope it gets you feeling better soon.

Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

New Member

Date Joined Apr 2009
Total Posts : 2
   Posted 4/6/2009 10:59 AM (GMT -6)   
I just finished my second infusion of Remicade, and i have to say for me, it is a miracle drug! I feel phenomenal and it was almost instantaneous...i went from hitting the bathroom 15 times a day to 3 times a day! :) I also have a fistula that was the primary reason for prescribing Remicade, and I do notice that it's not draining anymore, but I believe (I say b/c i'm not totally 100% sure) it is still there. The doc did say it could take months for it to work, but that as long as its' not getting bigger (i.e. draining more) or no more are forming, it's working. I also was very very nervous about the process myself after reading all there is to read about it on the internet and from your doctor. I was so determined that I was going to be the person who had all the horrible reactions, but it is a small percentage. You do have to go in there with the mindset that it will work for you and see where that gets you as well ! I will say that the whole process is a bit overwhelming emotionally. I mean, you walk into a room with a bunch of other people hooked up to ivs (depending on how the site is that you are going to get it ) and realize you're about to be one of them too. Bring books to read or a portable dvd player (I watch a movie and it rocks! - catch up on my netflix) and just relax. If you're nervous about it, take a xanax (the doc gave me one b/c he knew I was nervous).......And one thing I did learn is that you will be pretty tired afterwards, so plan to not go to work, or work from home (if you have the option)....or schedule it for the late time, and not the earliest time.
I wish you all the luck and please keep us up to date on your progress! When is your first infusion scheduled for?

New Member

Date Joined Aug 2007
Total Posts : 10
   Posted 4/6/2009 1:55 PM (GMT -6)   

I just got through the induction phase of Remicade and I feel fabulous.  I also had a fistula that prompted the doctor to take this step.  This has been a miracle drug for me also.  I feel as "normal" as I have felt in the 4 years since my diagnosis.  I agree with the earlier post, I am pretty wiped put afterwards, They give me zofran for nausea and that makes it a lot easier for me.  I have been able to start a weight loss program, because I have my Crohn's symptoms under control, can go grocery shopping withour abandoning my children in the frozen foods section.  AWESOME!

For me, the next real test is to see if I stay symptom free right up to my next infusion in 8 weeks.  I have read that symptom control becomes harder as the remicade wears off, but I have handled all of the "what ifs" so far, I will take the next ones in stride.

Best wishes, I hope it is a good move for you!

DX-2006, Resection,2006 at diagnosis, 3 months before wedding, prednisone dependant for most of the last year. Pentasa and 6mp.

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