remicade question for others with history

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landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 8/16/2008 7:35 AM (GMT -6)   
I have now had my 6th 10mg/kg remicade two days ago.   I never have experienced the wow factor with this drug but I have been slowly tapering prednisone to now I am on none.  I have been supplementing with the cortenemas at night, with limited results....I think.   The question I have is this.....I am suspect that remicade is not doing anything for me, and that I am just going sideways.  I still have urgency in the morning with a little blood, but no diharea.  I usually go twice to three times...then I am fine until 2 pm when I have mucus only, followed by more mucus at 6pm......It feels like the infection is right in the lower part of my rectum, due to pain, and not anywhere further up.....the left sided gut sounds have decreased and there is nothing going on at night except gas at 2 am like clockwork.  When I wake up inthe morning, is it normal to go right away....I mean right away, and should there be fluid left from the enema or just stool......I feel close to getting there, but I am not sure.......I feel fine energy wise, and I am thrilled to be pred free, if only for three days...I was on 1mg for amonth so it might not have been helping anyway......can anyone tell me if they think the remicade is working and answer any of my other questions?  I am 5 asa intollerant, and I think my three trials on asacol, colozal, and lialda actually made me worse.....ranting I know but curious as to others history.

UCfree_at17
Regular Member


Date Joined May 2008
Total Posts : 91
   Posted 8/16/2008 2:13 PM (GMT -6)   
Hey there. Well I cant really answer any of your ?s but I can say that I had 3 remicade infusions and the only thing i really noticed that it did for me was stop the blood in my BMs. Best of luck to you and I hope you get your answers. Sorry i couldnt help =/
Katrina
VIEW IMAGEKatrina
Severe Pancolitis, newly diagnosed
Currently taking:
Prednisone, Iron, Multivitamin, Methotrexate shot once/weekly, maybe starting Asacol to get off Prednisone =]
 
 
 
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/16/2008 4:19 PM (GMT -6)   
Remicade doesn't work for everyone, so it may not be helping, or only helping a little. It certainly sounds as if the results you're getting aren't satisfactory to you. Most doctors (and the manufacturer) advise the if Remicade isn't working after the fifth infusion it isn't likely to be effective. You're past that point.

I'd suggest you discuss this with your GI to figure out where to go from here. Once you know what other treatment options may be open to you, you can decide whether your current symptoms are bothersome enough to procede with them.
Judy - Southern US 
 
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.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 8/17/2008 4:50 PM (GMT -6)   
Hi landcruiser. I didn't see amazing results with Remicade till maybe a year after I was on it. To make a long story short, I wasnt feeling better at all on it and after 3 months I had a scope done which revealed my rectal ulcer was so much smaller- it was 1/4 inch deep and before Remicade it was 1 inch. I would have never known I was improving. I think the bm in the morning is from the enema, I always go more when I take the enemas/rectal meds. If you are ASA intolerant then that doesn't leave you many other med options so i'd stick with the Remicade but you should tell your doctor about your symptoms and see if there are any other meds to try if you're interested.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08


landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 8/18/2008 6:27 AM (GMT -6)   
Hey princess, thanks for the response. I noticed your on Humira now.....Do you find the Humira is working better for you than the remicade? Interested in maybe asking doc to switch.
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