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Remicade Question Regarding Effectiveness

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Ulcerative Colitis
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Posted 4/20/2011 12:54 AM (GMT 0)
Hi everyone,

As some of you may remember, I recently had my 4th dose of Remicade - 1 month after my 3rd dose, and it was increased to 10mg/kg.

Things are definitely better for me, but still not great. It has been 1 week since my last infusion. I am going 9x per day (down from 12-19) and about 60-70% of those are formed. There is still a bit of blood here and there, and I still have some BMs that are just a fairly small amount pus. Urgency is better with the little bitty BMs, but still quite intense for the larger formed BMs.

I am curious as to what "remission" looks like to those on remi? And, how long did it take to get there?

Thanks!
Posted 4/20/2011 1:45 AM (GMT 0)
I am sure you will get response from some of the members who use Remicade but what I have noticed is that people seem to have individual reactions to Remicade. Some people see significant improvement right after their first infusion and others don't see improvement until they have been on Remicade for a few months. It sounds like your symptoms and improving and that's a great sign. Maybe your colon needs some time to heal before you will be feeling 100%. I have heard of people who never get their UC under control with Remicade, I am not sure why it works amazingly for some and not at all for others.
Posted 4/20/2011 2:18 PM (GMT 0)
I started remicade in July 2009 and after about my fourth infusion is when I leveled out to about 4 bm's a day.  I was going about 10-15 a day before with a lot of urgency and accidents. When I had to go I had to go right then. blush I go about two times in the morning.  Morning is the worst for me. This is right when I get up then I go once after eating my breakfast, then I eat lunch and go once after that, I usually don't go anymore after that. Once in a while depending on what I eat I will go after supper but usually not.  I always have D never formed stools. I never really had blood so can't help you there. I had mucus but that is gone.  I also don't have as much urgency. If I have to go when I'm out I have time to find a bathroom. I can't wait forever but I haven't had any accidents since starting it. I had a scope done in March 2010 and the remicade didn't heal my colon at all. They wanted me to go off it i said give me a while longer because it was helping my symptoms and I felt like I had a life.  I just had a scope in Jan. 2011 and my left side is completely healed and my right only had mild inflammation. I use to have severe uc throughout my whole colon.  So, it took my colon about a year and a half to heal.  Good luck
Posted 4/20/2011 6:06 PM (GMT 0)
It took until after my 7th infusion to feel better. Now I get infusions every 5 weeks - 600mg. I have a life...
Posted 4/21/2011 12:46 AM (GMT 0)
Good to know - I'm about to start Remicade for the first time soon..
Posted 4/21/2011 1:12 AM (GMT 0)
I agree it is highly individual. And you don't always react the same to all biologics. I IMMEDIATELY saw results when I got my first loading dose of Humira-literally went from 7-10 bloody BMs (down from 20ish before hospitalization-pred got it down some) to one a day. I was great on that for a while, but it lost effectiveness starting at about 10 months in, and by 20 months in, I was done with it.

So when I went to the hospital the second time and we went to Remicade, I expected the same thing. I was really really surprised when it didn't work that fast. Again, the pred had made a bit of a dent, though not as much as it had the first time, and I had my first infusion in the hospital. Then I had the second...and then the third...and then I finally really started feeling better. After the 3rd, I think I was down to maybe 3-4 BMs/day, and after the 4th or 5th, I got down to 1-2. I have been on it now for 14 months, and consistently have one normal BM a day. No blood, no rectals needed for the time being either. Some days I will have 2 BMs, but I haven't had blood in a long time. So far, so good-but it did take longer to get into this remission than I had expected it to. This is what remission looks like for me personally. I have no idea how long it will last-hopefully a long time.

Don't give up hope! It can take a while. My GI also has mentioned adding in 6mp. Research seems to indicate that the combo works better than each on their own, but that is a very individual decision too. There are some additional risks involved. We decided to hold off on it because I wanted to have a baby, but it is still a possibility for the future. We'll see.

Good luck-I hope you get into that remission!!
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