I just did my 2nd Remicade infusion yesterday (I skipped the 6MP/Imuran step completely due to the severity and timeframe) and *fingers crossed* so far it seems to be helping even though I'm still freaking out about
the poss side effects when I let myself think about
them. I did discuss w/ my docs what would happen if Remicade didn't work and they indicated that at that point they can argue w/ insurance for Humira or another drug (I think one of the docs said Cimzia rather than Humira which surprised me) even though it hasn't been approved for UC. Like Sarah123 said my GI believes that Humira will be approved for UC next year. Based upon Nor_TX post it sounds like they can make modification/adjustments to your infusion that will allow you to continue taking Remicade even with a reaction. I know that I have read that there are many people that automatically get Benadryl before they get their infusions to reduce the reactions that occur (or to reduce the potential for reactions).
There also seem to be a lot of trials out there to get into (abatacept, golimulab, etc.) which offer additional med options (if you're lucky enough to get the drug) so there's more out there than just surgery as an option if Remi does end up failing or your reactions are too extreme. I know that in talking to my sis (medical statistician - not just a family member that thinks she knows stuff
) she indicated that the data out there is showing that the drugs that work on one autoimmune disease are working on all - they just have to deal w/ the testing and results for each disease to get it approved by the FDA so it takes forever and as we've all noticed, it seems like UC is one of the last diseases that the drugs are tested on. My objective is to keep my colon for as long as I can because it seems like there are new drugs and new information that can lead to new treatments coming out all the time and if I can keep it for long enough, there's a chance that I can hope to control this disease for good.
I'm REALLY looking forward to that day!!!
Ducridr - 34 - female
Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day,
Xifaxin 2 (200mg) 2x/day
, Prednisone 40 mg (started at 40mg Nov 08 - again), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement,
Junel FE (BCP)
,metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009.