Remicade and B12

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crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted Today 2:54 PM (GMT -7)   
My daughter has cd and right now trying to heal a fistula.  If she goes on remicade, is it for life?  or can you go off it when you have no symptoms?  The same with B12 shots - if started do you have to say on them?

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted Today 3:57 PM (GMT -7)   
Hi If she has had her TI removed then she would be on the B-12 for life. As far as the Rem. I cain't answer that as most don't seem to be able to stay on it forever .I was on it for 6 months and it did help heal one fistula. The B-12 helped me alot with the healing. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted Today 4:29 PM (GMT -7)   
Its different for everyone on Remicade on healing fistulas. If the fistula healed up fine perhaps her dr will take her off the Remicade. This is a question that he needs to answer. I was on Remicade 3 1/2 yrs and quit the infusions because it seemed to have lost its punch with me. Then I developed an abdominable fistula this past spring and had to resume the Remicade for it. My dr is trying to get my ins to approve Humira as I am having too many side effects now w/Remicade. I have been on B12 2 yrs. When I first went on it my dr said low B12 leads to anemia. It has taken quite a while to get my level back up. I also do not absorb well either. Susie


tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted Today 6:27 PM (GMT -7)   
I'm not sure about the remicade, but the B12 should always be continued. And one can develop much more than anemia. Neurological problems can develop such as neuropathy, memory problems and attention difficulties. Most cronnies don't absorb B12 very well because the terminal ileum is usually involved and develop scarring. Some B12 experts agree that SL methylcobalamin is as effective as injections. I get mine at Whole Foods or my local vitamin shop. My life changed 3 yrs ago due to B12 deficiency (I have had 3 resections) and most symptoms are improved but are still present.
DIANNE
Humira, pred and entocort 1/08
3 small bowel resections, 1 for perforation, 2 for strictures 
 


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 12/4/2008 2:02 AM (GMT -7)   
Hi, I am on Remicade for 5 years now. Once you daughter starts remicade she will be on it for life. The only way somebody gets off remicade is if they build antibody's to the drug. For me its been a wonder drug for me.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


crohn's pt mom
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 12/4/2008 8:33 AM (GMT -7)   
Thanks to all of you. I'm trying to educate myself before we see the dr.  It sounds like B12 should be started right away.  My daughter is blessed -that if not for this abcess -her cd has been very quite for the past year.  That's why I wasn't sure if she needed Remecaid.  Thanks again.
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