Coming off Remicade decision

Hello everyone. Haven't been on in awhile and just wanted to drop by again and maybe ask a view questions and hopefully chime in on other peoples issues. A little history of mine...I was diagnosed with UC in late July 2010 and basically was hit very hard with it. They tried everything at first and nothing seemed to work. Well eventually I came off of asacol, and prednisone and remained on 150mg/day imuran and Remicade. I have been in remission for 2 years now and am strongly debating coming off of Remicade and staying strickly on only imuran. Everytime I get my remicade infusion (once every 10 weeks now) I get a reaction, and am basically out of it for 2 days after (joint pain, headaches, lethargy). My GI is suggesting coming off of Remicade because I am basically 100% right now and can eat whatever I want. I hate the drug with a passion and want to come off of it. If I do flare, my last option is Humira-then surgury...cough cough. Any suggestions from somewhere who has come off of it with success? Or maybe someone who has tried what I want to try with no success? Please any information would be appreciated. Hope all are doing well and managing with their own issues.

PS I am 26 years old. Thanks again.

If you come off Remicade, why not try the 5-asa as a maintenance drug. Once a day Lialda should be convenient.

Remission is a valuable thing, and should be strongly insured.

Lonie has been on remicade for 5 years, and now is off, I guess 3 years. My goal is to take down remicade one day. I have been 2 years on remicade, feeling great, but my last c-scope show that on my left side are stil erosion and pseudopolyps. When you were last time on c-scope, and what are results?

Just been told that I can no longer stay on Remicade. Although it sorts the UC out my immune system is knackered, cold sores, weeping eyes, chronic nasal congestion, cracked lips, wounds that don't heal....

Next step I have been told is the surgeon, now i'm not sure about this, it seems similar to when i was a kid in the 60's whenever you had a sore throat the doctors whipped the tonsils out.

I survived ok when I was on 10mg Pred, but the joints ached a lot. With Remicade I can eat or drink anything but the risk is that if i catch anything serious the body won't be able to deal with it.

If a drug is causing more problems than the illness it is supposed to be treating then come off it and try something else. As per the previous post try Humira (I will as well before surgery) it might work for you. I will give it a go although my consultant said i would suffer the same complaints. You are still on a high dose of Pred so I suggest tapering a bit more to say 20mg before ditching Remicade.

Good luck !!!

Thank for your responses everyone. Hey CGK, I actually have never heard of this drug before, I will be doing some research on this, hopefully I like what I see:) As someone has mentioned about prednisone, I am actually off of it completely right now, my signature needs updating. Hmmmm I wonder if it is because of remicade that I can basically eat and drink anything I want? That is something I might want to consider before coming off of remicade, because I really don't want a restricted diet, if I can help it. If I have to of course I will, but I prefer not to. Also, no I have not got a scope done yet basically since it started a few years ago, I will have to look into that as well, thanks.

I'm in the position of needing to stop my Remicade infusions, and am currently in remission. I have a mono infection that will not go away... or a reaction the the Remicade. It is greatly impacting my day-to-day life. If I were not experiencing these issues I would not stop Remicace... (and I was a person that took three years to be convinced to try Remicade due to the side-effect list).

It's really easy to forget how awful UC is while you're in remission.

All that being said, some people have had success going off of Remi while in remission and maintaining with 5-asa's. Just make sure you are prepared for the fact that you may relapse, and know beforehand what you will decided to do then... and if you are mentally ready for it.

Good luck!

First you have to do c-scope. I was thinking that my colon is healed because I have no simptoms for 2 years, but c-scope showed erosions in my colon. Second, do everything before surgery. There are much more risks and worrys with surgery, recovery, j-pouch, pouchitis, etc... Also in most part of Europe Remicade is not maintenance drug, but is drug to heal colon and than wean off...

Addition to above thread do not go off of Remicade after only three infusions you will flare.

Okay I think before I even think of coming off of remicade I will at least do a scope to find out what is going on inside first. I just really hope that it is the imuran that is keeping me in remission and not imuran AND remicade. My GI is 100% on my side for me stopping Remicade, then again it is me that has to deal with the consequences.

Cavalier9,
Sounds about right, 48 hours after the infusion somersaults with the bodies systems. Be aware once you stop Remicade you can't go back. At Least That's what they say, you develop antibodies to it. I'm taking Cimzia. If you go to another TNF like Humira or Cimzia these are self inject pens / syringes. Do yourself a favor. Let them warm up the full 30 minutes out of the refrigerator. Less sting and pain. My BP came down to my old lower level when I stopped the Remicade. I thought it was great despite the BP and joint / muscle pain. Still have the Joint pain though.
Hope you find something that eases your pain and mind.

T
normally on Crohns fourum

Okay, after reading all of the responses, a scope seems to be what I need to do, thanks.