Going off of Remicaide?

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New Member

Date Joined May 2009
Total Posts : 2
   Posted 5/19/2009 10:03 PM (GMT -6)   
I am 24 and was diagnosed with UC 3 years ago. I have been on Asacol, Canasa and Lialda over time, and last summer I ended up in the hospital. The pain that I had was right under my rib cage, but they just figured that my problem was my colon... and then they put me on Remicaide. A week later they called and said taht in the gall bladder tests they had run, they found that wasn't working so I got taht removed in August. I've been on Remicaide ever since, but I do not like that it is an immuno suppressant... I've had a cold/stuffed up nose for 4 months. It isn't going away. I feel like supressing my immune system is wrse for me in the long run than being on other drugs for this. I would like to go back on the Asacol or Lialda and try changing my diet (figuring out what affects me) and I started going to the chiropractor because the nervous sytem affects your untire body, so if the kinks they see in my back can be back in place, then in theory messages frommy brain to body parts should make them function better. My GI dr is very against going off of Remicaide and prettymuch has said that I will be on it the rest of my life, but I jsut want off. I read that someone elses doctor recently had taken them off of the drug. Does anyone have any thoughts on this? Has anyone tried more natural ways to solve this problem than by just covering it up? I don't want to have to go to the hospital every two months for the rest of my life to stop my immune system, if I can help it. Thanks for your input.

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 5/19/2009 10:18 PM (GMT -6)   
Having tried and failed to control this disease with drugs and diet for 25 years, and finally found relief from Remicade, I think you are crazy to risk it. I also think it is highly unlikely a chiropractor would even pretend to be able to effectively treat UC.

I would take a stuffy nose over the pain, anxiety, exhaustion, inconvenience and lifestyle limitations of a colon flared with UC anytime.

Probably not what you wanted to hear, but that's my input!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow

Veteran Member

Date Joined Mar 2008
Total Posts : 1766
   Posted 5/19/2009 10:44 PM (GMT -6)   
I've had one GI tell me that I have should use Remicade indefinitely; another GI told me to only use it for a year and then to wean off to 5 ASAs. Now I'm seeing a 3rd GI and getting his opinion.
But I know what you mean about worrying about long-term use of Remicade. But I really don't want to have surgery (I think my quality of life is better now than it would be after surgery) and I'm definitely risking that if I go off of Remicade. As of right now, my family wants me to go for surgery and I want to stay on Remicade. It's a tough decision. Sorry I can't be any more of a help!
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric

Regular Member

Date Joined Feb 2009
Total Posts : 114
   Posted 5/19/2009 10:58 PM (GMT -6)   
My GI recently advised that if I stop Remicade, it may not have the same effect should I need to start up again.

I just finished my 4th treatment and it's finally doing some good. I don't like the side effects either but my life has somewhat returned to normal.

I'm just hoping to be off the Pred within a couple months ( 3 attempt at taper )
Diagnosed U.Proctitis 07

Flare Feb 09 - Diagnosed with Severe Pancolitis
Remicade, 50mg Prednisone, Cortenema PM, 1g 5 ASA suppository AM

New Member

Date Joined May 2009
Total Posts : 2
   Posted 5/19/2009 11:03 PM (GMT -6)   
I guess that previous to being on this, I don't think that my side effects were that bad. Sometimes the things didnt work particularly well, but I guess I feel like I don't know what was my uc and what was my gall bladder and last spring I had stomach ulcers too. I feel like the effects thgat they changed me onto this med for were for things that weren't my colon. I feel like it was just something that was thrown on me and then other things ended up being the actual problem
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