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Ulcerative Colitis
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Posted 9/19/2007 7:29 AM (GMT -6)
First, I apologize for the new posting. I know there are others about Remicade, but I figured that with a new posting I might get more people looking, and I did not want to change the thread of someone else's posting.  Anyway, my signature has my current meds. Over the past few weeks I have been tapering from my prednisone. I am now down to 25mg daily, with the goal to be off by mid November. I have had 2 remicade infusions. I am scheduled for my 3rd (6 week interval) on September 28th. Since my pred. taper I have had more BMs (up to 5 per day from 1-2 per day when at the prednisone 50mg mark). I have had some bleeding on/off this week (currently none), but bleeding was never one of the major syptoms in my UC, and no D or urgency even with the slight BM increase. I guess my question is this: is there a "usual" amount of time it takes Remicade to start working? How will I know when to evaluate if it is working for me? I seem to be having some worsening in my symptoms with the pred. taper, but not a huge difference as yet. I am sure everyone is a little different with Remicade, but are there any common time frames for effective/not effective I should be looking at? Can people give me some of their experiences as to how long it took for Remicade to work or not work. Thank you in advance for any help.
Posted 9/19/2007 8:28 AM (GMT -6)
From my experience and readings azathioprine can take over 3 months to start "working". Remicade usually works more quickly; 3 infusions over 3-6 months should be enough to yield results. Like me, however, it's going to be difficult for you to determine what caused what. You're tapering prednisone, ramping up azathioprine, having Remicade infusions plus taking other medications. You need to ask your doctor what the "plan" is for you. They don't like getting into those details with patient because most people are ignorant and it takes time to explain but in order to confirm the doctor knows his stuff just ask. They are supposed to read the journals and study the data. Your job is to keep accurate and detailed reports of your progress and symptoms so the doctor can determine how best to help you. Record daily what your medications are, any illnesses you have, symptoms, and anything else you can. You will probably benefit from this near term and years down the road.
Posted 9/19/2007 8:36 AM (GMT -6)
Hi Glenn, my Remicade infusions took a few months to have complete effect, and I also had to reduce my asacol intake to get where I am today. I still have 2 to 3 bms per day but that's like vacation compared to before Remicade!!!
Also, I would suggest talking to your GI about getting off the Azathioprine while you're on Remicade. There is some correlation of a very small amount of people taking azathioprine and remicade getting Lymphoma. My GI took me off Azathioprine and put me on methotrexate.
James
Posted 9/19/2007 12:25 PM (GMT -6)
I have been keeping very detailed logs, and bring those to my appts. My GI is considered the UC guru in my area (Western NY State). However, one of the drawbacks is that he is extremely busy. Having the logs help, and I will ask more specifically the plan. The only thing he discussed about Remicade was having me on it for 1-2 years and then trying to scale back. As for the Azathioprine, I did ask about that, but my MD said that he does think that the cancer link has really been proven. He believes that there was no evidence that the patients that did develop the cancer were not predisposed for some other reasons, and as long as it happened the drug company has to list it as a potential side effect. He wanted me to stay on the Azathioprine. I will do some more reaearch on that, and ask some other doctors I know. The comment about my other medications is right on target. On of my concerns is that I do not know what is causing what or helping. Hopefully my logs will help with that. Thanks!!
Posted 9/19/2007 12:34 PM (GMT -6)

Took me about three infusions to start to feel better. I have been getting them for almost two years.

Danno

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