Remicade not working!!

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Chromes
Regular Member


Date Joined Jun 2006
Total Posts : 28
   Posted 3/12/2008 8:49 AM (GMT -7)   

I have been on remicade for approximately a year and a half and I’ve been totally fine. I had my life back! Two weeks ago I went in for my eight week infusion and it didn’t do a thing! I’ve slowly been regressing and now I am in so much pain. I usually get some minor stomach cramps in my seventh week just before my next infusion, but they always go away right after I receive my next infusion.

My doctor put me back on Pentesa but so far it’s done nothing.

Is there any blood test that will show remicade anti-body resistance?

Is it possible the pharmacist messed up the dosage?

Have any of you had this happen to you?

What’s my next step?

Thanks!


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 3/12/2008 9:43 AM (GMT -7)   
My doctor did a Prometheis test to see if I had developed antibodies, which I had.  I think it just measures how much of the Remicade is still showing up in your system...if very little is showing up within so many weeks of the infusion, it means your body has built up the antibodies and it's not staying in your system as long anymore.  I developed antibodies earlier on than a year and had to increase the frequently of the infusions.  Even with that, I developed allergic reactions and ended up losing response about a year after I began it.  If I'm wrong on the Prometheis test info above anyone, please feel free to correct me.   
...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/12/2008 10:54 AM (GMT -7)   
I had a similar experience with Remicade. It slowly lost effectiveness (though I never made it the entire 8 weeks) to theI point I was infusing every 4 weeks. Insurance wouldn't cover it so I tried Humira. When that didn't work I tried Remicade again but had an allergic reaction on my second infusion. If it's still helping but just not lasting, talk to your doc about having the infusions more often. Have you tried anything like AZA (Imuran), 6-MP or methotrexate along with the Remicade? Something that helps.

Best of wishes! I know how scary it feels to think about losing Remicade!
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05
--1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone
--tried Prochymal in Phase III study (can't wait til it's approved!)
--waiting to start Tysabri
--single mom to 10-year-old girl


Chromes
Regular Member


Date Joined Jun 2006
Total Posts : 28
   Posted 3/12/2008 11:14 AM (GMT -7)   
Thanks for the replies!
I was taking 6MP along with remicade. My doctor took me off the 6MP because he figured it was the remicade that was keeping me in remission. This was approximately six months ago. My doctor asked me if I wanted to go back on the 6MP. I guess maybe I should. At least it’s a place to start. I know it will take time for 6MP to build up in my system. It probably won’t be a quick fix.

Can anyone confirm what Zena said about the Prometheus test? Can they really test for that? I asked my doctor about it and he said he didn’t think that test could test for anti-body resistance, but he sounded unsure.
Thanks.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/12/2008 12:25 PM (GMT -7)   
I think this is the test...
http://www.prometheuslabs.com/Products_Diagnostics_Infliximab.asp
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05
--1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone
--tried Prochymal in Phase III study (can't wait til it's approved!)
--waiting to start Tysabri
--single mom to 10-year-old girl


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 3/12/2008 4:11 PM (GMT -7)   

"PROMETHEUS® Serum Infliximab/HACA Measurement can aid physicians in determining the dose of infliximab and guide infusion intervals. The HACA portion of the test detects Human Anti-Chimeric Antibodies (antibodies against infliximab). Patients that develop HACA may experience infusion reactions and/or a reduced duration of efficacy of infliximab. "

You need to make sure that your insurance will cover the cost of this test. Some insurance companies do not cover some of the tests done by Prometheus labs.


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 3/12/2008 6:48 PM (GMT -7)   
i was on remicade shortly after it came out, since the late 90's. it was the only thing that got me off the predisone. it wasnt until late 2006 that it started to lose its effectiveness with me. at that time though i was feeling fantastic though by going hardcore with the maker's diet. that or another diet like the scd may be something worth trying now if you havent given it a chance already....
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

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