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Remicade - What to expect?

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Posted 11/5/2008 12:23 PM (GMT 0)
I had my first remicade infusion on 10.17 and my second on 10.31 - I seem to be responding but have not reached remission - what should I expect

Any feedback would be appreciated.

 

Posted 11/5/2008 3:58 PM (GMT 0)
Are you on pred also? I was perfect through my first three infusions untill about a week after I was completey off pred. Then I had a mini flare and I am coming out of it. My fourth infusion is at the end of Nov. I think Remicade is helping still. This whole flair I have had almost no blood and less pain than normal. My SED rate is high but not as high as it normally is when I am flaring. I would stick with it for at least 5 infusions.
Posted 11/8/2008 12:24 AM (GMT 0)
Thanks so much for the reply -

Yes, I am 40mg of Pred and it seems to me that it takes a couple days after the infusion for things to settle.  For example I had my second last friday and was having symptom until Tuesday - I am allot better that when just on the Pred -   less pain, blood etc.    

I  am hopeful about the 3rd treatment pushing remission - but we will see. 

Thanks again

Posted 11/8/2008 1:03 AM (GMT 0)
I just started Remicaid in Sept. So far I have had 3 infusions Before I started my sed rate was 115, last week it was 25. I am now having formed stools but I still have some urgency with mucous like discharge as well. I am now tapering off of the pred and am down to 20mg a day. I do see some redness in my stool from time to time. I guess it has been working but I am not in full remission yet. I heard it takes about 5 infusions but some people get instant results. I go for my next one Dec 3.
Posted 11/8/2008 1:15 AM (GMT 0)
I would give it time - I am about at the point were I can't make heads or tails of this stupid disease - I would be careful as you taper the pred.
Posted 11/8/2008 6:31 PM (GMT 0)
I agree on trying to figure it out - once you think something is working the next day it doesn't. Good point on the taper - I started to taper in October (before the Remicade) and went immediately out of control. I plan to hand with it - Things have definately improved already - but I was hoping for some magic. :)
Posted 11/8/2008 6:49 PM (GMT 0)
My daughter has her 3rd infusion on the 17th, and we are in your same boat. Can't make heads or tails out of this seemingly random disorder.
She is way better, but not in remission. More urgency/bm's than the first couple of weeks--I always fear that a spike is the beginning of the next round of a bad flare. It is like standing on the edge of the cliff and looking down. She increases her pain and bm's at the time of her menstrual cycle. Anyone else notice a correlation?
Posted 11/8/2008 8:14 PM (GMT 0)
There is a correlation for me also - I have heard others say so to. Sorry your daughter is so young to have to deal with this - I keep thinking I am too young but 15 is hard enough without health problems.
Posted 11/9/2008 12:08 AM (GMT 0)

Being a teenager is all about carefree and indestructable - sorry to hear that you daughter has missed out on that - Katmom.

On the other had I am sure she is going to be a tougher customer as a result.

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