help, i don't think remicade is working

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Regular Member

Date Joined Apr 2008
Total Posts : 22
   Posted 6/2/2008 2:15 PM (GMT -6)   
Hi, i had my last infusion five weeks ago and my symptoms are starting to return slowly but surely, just cramping and feeling tired all the time at the moment. i spoke to my gastro nurse today and she told me that it should last for up to 12 weeks and that i probably wont be recommended to carry on with the treatmant. i'm gutted because i hadn't felt this good in ages, up until the last few days i felt normal and couldn't believe it. i fought long and hard for this treatment and i don't know what the future holds if they take me off it, i cant face the thought of surgery so what do i do, help!

Scrap Girl
Veteran Member

Date Joined Jan 2007
Total Posts : 653
   Posted 6/2/2008 2:36 PM (GMT -6)   
How long have you been on it? Could the cramps be from something else or are you definitely flaring? I have had a "blip" or two since I started Remicade about a year ago but it never turned into an all-out flare.
Diagnosed with UC in Feb. 2005
Colazal (9 a day)
Folic Acid

Regular Member

Date Joined Jun 2005
Total Posts : 213
   Posted 6/2/2008 3:41 PM (GMT -6)   
That is interesting b/c I get the infusions every 6 weeks and I still come out of remission here and there. I am not a Remicade expert but it seems that you might need more treatments to get yourself well. Hope you feel better soon!

34 year old female, Diagnosed 5 years ago
Current Meds: Remicade every 6 weeks, Prednisone 20mg, Prevacid, Sustenex, Lialda, Lexapro (anxiety), Synthroid, Iron, vitamin, Fish Oil
Expecting first child 12/08 via gestational surrogate!!!!

Veteran Member

Date Joined Feb 2005
Total Posts : 6448
   Posted 6/2/2008 4:11 PM (GMT -6)   
I think you need to talk to your GI; when I first started receiving the treatments I went 2 weeks, 4 weeks, six weeks, and then onto every 8 weeks. When I first started, it was tough to make it the eight weeks let alone twelve! Some folks need the treatment every six weeks for awhile until they can make it eight weeks; also enemas kind of help to get over the hump until your next infusion....but definitely, please talk to your GI.

Remicade - will have my 22nd infusion on June 12.
Vitamin B-12/Biotin, Probiotics
Co-Moderator for the UC Forum

Regular Member

Date Joined Apr 2008
Total Posts : 22
   Posted 6/3/2008 4:18 AM (GMT -6)   
Thanks for the words of support, it's really helped. i will print out the responses i've had as amunition when i go to the hospital. i also think i'll take my husband as backup! I cant face the thought of coming off remicade as it's the first time in 2 and a half years that i've actually felt normal. i had a lovely family holiday in majorca last month and i felt great and could pretty much eat what i wanted without running! Also my last really bad flare was christmas so i think 5 months without one is amazing for me as i was ill all the time before, how can they possibly say it's not working? i think it's probably to save money, as if they get a slight hint it's not working they would save the precious NHS thousands!
Thanks Again Folks
Miriam x
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