Going from bi-weekly to 6 week Remicade gap

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Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/8/2008 1:31 PM (GMT -6)   
I'm getting the second infusion shortly and then will come the 6 week gap and eventually 8 week gaps between infusions, assuming all goes well.  So far the only change- which I suppose is not to be scoffed at- is going from multiple D a day to one or two soft formed stools.  But nasty gut pain continues even on 20 mg pred.  I'm hoping this 'recharge' or priming will really kick in but am worried that the long gaps between infusions will not last.  Or does the priming effect take a while to kick in but it builds momentum?  I  guess I just have to wait and see and keep being patient.  Desperately looking to get off the pred once and for all- only time will tell if it's that or the knife.
Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 11/8/2008 4:45 PM (GMT -6)   
I'm starting Remicade on Wednesday, so I'm curious to hear the responses, too.  My first four infusions will be two weeks apart, then I move to eight-week gaps.  I've been on Prednisone for two years and every time I taper to the low doses, I flare.  I told the doc I don't want to go back up again, and he doesn't want me to, either.  I've been on 6-MP, but was taken off because it lowers my white count.  I had the TPMT test again to see if I could go back on and my level is below the low end of normal, so that's out of the question.  I sure hope Remi works 'cause I don't want the knife!  Because of another surgery I've had (not related to my UC), I'm not a candidate for the J-pouch.

Ulcerative Pancolitis (dx'd 6/2002)
Pentasa (4gm/day); Prednisone 5mg am, 5mg pm; Aranesp injection every week for anemia;
Started iron infusions 7/18/08; starting Remicade 11/12/08
6-MP (discontinued as it lowers my white count)
Immodium-AD (occasionally)
various meds for other conditions


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 11/8/2008 5:27 PM (GMT -6)   
For some reason my GI didn't do the front loading. I had good results after my 1st couple of infusions (eight weeks apart), but then not so good. I ended up moving to six weeks apart about a year ago, and my last colonoscopy in October showed I am mostly healed. Prior to Remicade I was steroid dependent on Prednisone and even with the Remi it took me nearly a year after the infusions to wean off of it. I was on Pred for two full years. Do have some lasting side-effects, but I've heard of worse from people on this board.

The Remicade has really been a godsend for me, I was seriously considering surgery until fairly recently, but now I've put those plans on hold.

Don't worry too much about going six weeks -- the infusions are long lasting. You've had the front-loading, you should be fine. And worryi8ng about things over which you have no control certainly doesn't help with UC -- you have to keep stress and worry down as much as you can.

Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!
11 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; 11/08/08; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D; Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro

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