Continuing Remicade

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onedaymore
Regular Member


Date Joined Apr 2009
Total Posts : 111
   Posted 4/10/2010 3:21 PM (GMT -7)   
I've had three Remicade infusions, and the last time I spoke to my GI, he said it was my decision if I wanted to keep going or stop. He wants me to stop, since he's not fully convinced I need it (his NP put me on it, not him). I hate my GI, and his opinion means very little to me, but I have to give him my decision on Monday, because I'm due for another infusion next week, and he will need to give me the go-ahead to set up the appointment.

I've spent the last few days trying to weigh the pros and cons. The major pro is that I've had barely any diarrhea since my first infusion, and I'm feeling a lot better. The major con is that it costs a lot. Of course, there's the antibody thing . . .

My Crohn's is considered mild, and the GI's opinion is that me being on Remicade is like using a hammer to kill a fly. He says there's no reason for me to worry about antibodies, since I most likely will never be bad enough to need it. But I was apparently bad enough for his NP to say, "You either need to be hospitalized or start Remicade," two months ago!

I just don't know. I'm leaning towards staying on it, but . . . like I said, I just don't know.
Diagnosed with Crohn's in 2008 at the age of 22. Also dealing with gastroparesis & GERD.
Currently on: Remicade, Imuran, Pentasa, Tramadol, Welchol, Phenergan, Ambien, Reglan, Prilosec, Hyoscyamine


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 4/10/2010 3:57 PM (GMT -7)   
It depends if any of the oral meds control your symptoms or not. No point of spending 50x the money if you can get the same results from a few pill per day.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


onedaymore
Regular Member


Date Joined Apr 2009
Total Posts : 111
   Posted 4/10/2010 6:28 PM (GMT -7)   
Pentasa does jack, as far as I can tell, but the GI's NP won't let me go off it. Imuran worked for a year, but then stopped. I was Prednisone twice during this last flare, and it didn't do the job. My inflammation numbers didn't go down until after my first infusion, but the GI thinks that's just a "coincidence" (according to him, everything is a coincidence *eyeroll*)
Diagnosed with Crohn's in 2008 at the age of 22. Also dealing with gastroparesis & GERD.
Currently on: Remicade, Imuran, Pentasa, Tramadol, Welchol, Phenergan, Ambien, Reglan, Prilosec, Hyoscyamine


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 4/10/2010 8:43 PM (GMT -7)   
From what you've said, I would do the following:

1) Continue Remicade for now.
2) Start looking for a new GI or at least get a second opinion.
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!


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/11/2010 7:07 AM (GMT -7)   
I agree with Rider. I think the Remicade IS doing something for you. Many docs are now starting from the top down on meds, so its not unusual to start with Remicade. I would also get a second opinion. When his NP and he don't concur, then something isn't right. Good luck to you!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/11/2010 7:07 AM (GMT -7)   
I agree with Rider. I think the Remicade IS doing something for you. Many docs are now starting from the top down on meds, so its not unusual to start with Remicade. I would also get a second opinion. When his NP and he don't concur, then something isn't right. Good luck to you!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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