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interesting remicade tidbit

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Ulcerative Colitis
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Posted 5/29/2008 4:59 PM (GMT 0)
http://www.ccfa.org/reuters/secondlinetherapy

well I think most of us know this, but it is interesting anyway!

Posted 5/29/2008 7:10 PM (GMT 0)

That's what I have - complete mucosal healing. My last colonoscopy was absolutely normal, my GI said he couldn't even tell I'd ever had ulcerations.

No, it's not a cure. If I go off the Remicade, it will come back. But for me, for now, it's complete control, and I'm darn happy to get it.

Posted 5/29/2008 8:07 PM (GMT 0)
No not a cure, but I believe it's done the same for me; actually I think that's why my doc was rather aggresive in getting me going on Remi. I thank him for that.

Posted 5/29/2008 8:42 PM (GMT 0)
good to know. I don't know if I am moderate or severe, I now have pancolitis, I know I was considered mild before when it was proctosigmoiditis.

I may be on the remi train pretty soon.
Posted 5/29/2008 11:40 PM (GMT 0)
I also have pancolitis but unfortunatley was given the recommendation not to take remicade due to my history w/ pituitary tumor... What a bummer!
Posted 5/30/2008 1:27 AM (GMT 0)
It certainly has helped me, although I've come out of remission while on it. My doc said long-term use of Remicade is not good so I am already worrying about what we can do once I have to get off it. I've been on it for over a year and I've come out of remission at least three to four times including right now. My disease is stubborn

and they've tried everything so who knows. I would recommend Remicade though.

Posted 5/30/2008 3:02 AM (GMT 0)
Hello
Last year i had a c-scope in May... i had been in year long flare
My Doc told me that i was the worce case of colistis he had ever seen
Was bleeding everyday ....15-22 BM's a day a lot of pain ..i started Remicade in Oct 2007 ..the bleeding stop ....Bm's drop from 15-22 to
7-15 a day a lot less pain ..i had a c-scope last month a lot of that had heald up ....i am not in remission but it is a lot better my quality of life has gotten a lot better ....it is the remicade ...because the other Drugs i am on were not doing anything ..
Posted 5/30/2008 3:06 AM (GMT 0)
Is it true that once you start Remicade you cannot stop because it will not be effective again if re-started?
Posted 5/30/2008 12:11 PM (GMT 0)
Mbx5, about half the people who stop Remicade are not able to go back on it either because they have allergic reactions when they try to resume treatment or because it isn't effective the second time. I have heard of some docs using it as a short-burst drug, maybe three infusions, to induce remission. I guess only time will tell if that's a good strategy or not.
Posted 5/30/2008 1:41 PM (GMT 0)
angeltt- your doc said that remi wasn't good long time?

Has anyone else heard that?

I recently met a woman who has been on it for ten years with no side effects. She goes to the same Gi I do.

Just curious if anyone else has heard this from a doc.
Posted 5/30/2008 1:47 PM (GMT 0)

I think like any other drug, they would like to be able to wean you off of it at some point. My doctor talks vaguely about eventually dropping my dose back down to 5 mgs/kg, or lengthening the time between infusions, to see if we can taper off Remicade. I hear that & I think NO WAY! For me, it's working better than anything else- I have no intention of ever coming off it unless it totally loses effectiveness. My doctor knows this too- I think that's why he's vague when we talk about it! It's been about 2 years of infusions for me, & things have been mostly smooth. I haven't heard of any specific long-term risks associated with it, not from my doctor or from other resources.

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