When do you know if Remicade is not working?

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Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/1/2008 10:29 PM (GMT -6)   
Ok I know that some drugs like 6MP and Imuran can take months and months, and at the other extreme pred can be felt in many ways within minutes or hours, and usually has some clinical response within days at most.  So my impatience may come off as ridiculous, but here goes.  I am about a week since my first infusion of Remi.  So far, I haven't been able to truly notice any difference... starting to worry this will be another dead end while trying to be patient.  The only thing that has changed in the past few days is numbers of bowel movements per day.  It has gone down from 3-8 down to 1-2 for two days now but they are still muddy or loose, and the gut pain remains unchanged, so it may just be the effect of weeks of higher dose pred.  I realize some may (???) take weeks or 2 or 3 infusions to notice it really "kicking in" but I was hoping to fall into that category who seem to experience a big drop in symptoms within a few days of their first infusion.  Is there a cutoff where you can know it probably isn't helping and that I should start to fast track surgery? 

Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since
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
 
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 11/2/2008 12:08 AM (GMT -6)   
Probiotic, Remicade doesn't work immediately for everyone. I believe the standard is if you don't see any results after the fifth infusion, it isn't going to work. On the other hand, you do have improvement already after the first infusion, which is good. Remember that even when it works, your colon still has to heal and you may continue to have some lingering symptoms until that happens.

I noticed improvement after my second infusion. After about a month, I considered myself in remission. I still didn't have well-formed stools and I occasionally had pain, but was so much better. I continued to improve and regain my energy over the first 6-12 months. Give it a little time yet before you give up.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


vega19
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 11/2/2008 12:14 AM (GMT -6)   

It took about 10 days before I noticed a difference with Remicade. It started with fewer BM's a day. I didn't start having more formed BM's till after my second infusion. about a month after my 1st infusion I was down to 1 BM a day which was formed but soft. Things just got better from there. It may not happen as fast as you want but hang in there and give the medication a chance. Some peoples IBD is more stubborn than others.

 

V


31 year old female diagnosed with UC (entire colon) Feb 2008
(4) 400mg Asacol 3x a day
Remicade 10mg/kg every 8 weeks
Omega 3 supp, calcium supp, VSL 3
Prednisone 18mg (tapering 2mg every week)


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/2/2008 7:14 AM (GMT -6)   
Thanks a ton!... naturally as I am running out of ammo. I am lookin for the slightest sign. I guess reduced BM's, even with great pain, is something to hang my hat on. Will see how it goes for a few infusions.
Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since
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
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 11/3/2008 11:20 AM (GMT -6)   
Probiotic, I've had 4 Remicade infusions and am still not in remission although I'm very close. Sometimes Remicade can be helping and you might not know it. Although my symptoms were still bad after the 3rd infusion, my c-scope showed that everything was healed except for a few centimeters. So don't lose hope yet! 
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil
 

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