Remicade possibly not working anymore. Wish me luck.

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jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 6/15/2008 11:20 AM (GMT -6)   
Last spring, Remicade was the only thing that prevented surgery. Now, I only go about 2 weeks post-infusion without bleeding (but still have diarrhea), then flare for the remaining three weeks before my next infusion.

I'm headed in to see my GI tomorrow. Wish me luck.
James

21 yrs old, diagnosed severe pan ulcerative colitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Remission since 4 July 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 8 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...
"God bless Remicade!"


bap06
Regular Member


Date Joined Jun 2008
Total Posts : 57
   Posted 6/15/2008 11:25 AM (GMT -6)   
That really stinks... Hang in there, and wishing you lots of luck with your appointment tomorrow!
*Diagnosed 10/07 (6 months pregnant w/ 2nd baby)
*Asacol (4 pills 3x a day)
Canasa
Prilosec
Calcium, multivitamin, Metamucil


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/15/2008 11:48 AM (GMT -6)   
So sorry to hear that, James. Unfortunately, sometimes it works for a long time, sometimes a short time and sometimes not at all. I hope your doc has some new options for you. If that isn't the case, people who have had the surgery are universally happy they had it done, so it must not be that bad.

Keeping my fingers crossed for you.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 6/15/2008 6:35 PM (GMT -6)   

hi there~~ I am sort of in the same boat, James- when I first started Remicade, back in April '07, it worked great, & saved me from surgery. After my 2nd infusion I developed strep pneumonia, drug induced hepatitis, bacteremia, a bunch of stuff & wound up in ICU for 5 days. After that, it never seemed to give me the great results it initially had. We (my GI & myself) thought it may have been due to the disrupted loading schedule- you know, the 0-2-4-8(???) week schedule. So things went on, I became more & more symptomatic in a shorter & shorter time span after my infusions- like you, I'd have maybe 2 good weeks- no blood, but still urgency & D, then it was misery 'til the next infusion. So we upped my Remicade to the 10mgs/kg dose- are you on that dose now? We also shortened my dosing scheule to 6 week intervals. That also saved me from surgery! And it's been...alright. I still have urgency, no blood & no D. Unless I've eaten something awful or it's close to my menstrual cycle- then all bets are off. I dunno.... My last colonoscopy (about 2 months ago) showed 10" of active inflammation, & hundreds of pseudopolyps. So the Remicade is helping, but not as much as it should. I guess my advice for you would be to up your Remicade dose if you can, & if not, give Humira a try. Or schedule surgery, if you're ok with it. That's my plan- I had surgery scheuled twice & cancelled it both times. I haven't been on pred since February, which is monumental for me! I still have urgency in a BIG WAY- it's accident time if I don't get to a bathroom in about a minute. I can deal with that though. I plan to ride the Remicade wave as far as I can, then give Humira a go. After that, who knows... it's not that I'm averse to surgery, but to have it done when I'm not "sick" is hard. Talk to me about it when I'm in the hospital on IV 'roids- until then, nah. Please let us know what your GI says- good luck!!!


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 

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