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SUPPORT NEEDED REMICADE

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Ulcerative Colitis
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Posted 12/17/2009 10:35 PM (GMT 0)
Today was my first day for Remicade and wondered when I will see some change. Someone said it could be immediately but so far nothing. Can someone shed some light on this? Thanks Pat
Posted 12/17/2009 10:38 PM (GMT 0)
May be tomorrow, two weeks, 3 infusions. Everybody is so different you just can't tell.
Posted 12/18/2009 11:51 AM (GMT 0)
I noticed a significant improvement two days after my first infussion. My third is coming up on the 31st (Happy New Year!). For the past two weeks I noticed blood (bright red so I think it is from my hemmies) in my first bowel movement of the day and on the toilet paper. If I have a second movement, no blood. I do not have the urgency nor anywhere near the bleeding I had before the Remicade treatments (I had two so far). I am tapering prednisone, today down to 5 mgm.
Everyone is different. I hope you notice an improvement real soon.
Posted 12/18/2009 9:55 PM (GMT 0)
Hang in there and give it at least a few days. I've been on it for a year. When I started, I was in a horrible flare. 3 days after the first infusion, things looked great. Then the flare returned. After 2 infusions there was a slight improvement, but it wasn't great and surgery was discussed. Finally after 3 infusions, it held and I was on my way to remission. I've been in full remission since last March and feel great. I was in the bathroom 40 times a day this time last year. Now, it's maybe 1-2.

One thing to note: they can increase the dosage and how often your infusions are. I am at a higher dose than most. I personally have no side effects from the medication. I have even watched family members come down with colds and other contagious illnesses and haven't caught anything (knock, knock).
Posted 12/19/2009 2:16 AM (GMT 0)
Love to hear these reports fargman. My only regret was not listening to my GI doctor in May of 08 when I was in the hospital in very bad condition. He wanted me to start the Remicade right then and there. I was frightened because I tested positive on the PPD test back in 67. I worked in a hospital lab and I also had an aunt, through marriage, who died from TB and I know I was around her when I was a child, not often but enough to be exposed. I was scared to death even though my chest xray was normal. The doctor back then told me the TB virus was probably dormant in my system. His words stuck with me. I was tested for TB a few weeks before starting Remicade and it was negative. All that worry for naught! My GI doctor said that I could have had a false positive back in 67.
Reading the side effects from Remicade also scared me. However, I was so sick I was willing to try anything. My quality of life was soooo poor. Thank GOD for Remicade!
Posted 12/19/2009 4:20 PM (GMT 0)
it took me a couple weeks to start feeling the effects of remicade. and it was gradual... like for instance, i didn't have to get up to go to the bathroom in the middle of the night anymore, or the urgency decreased a bit. just little by little things started to get better. so don't be worried if you don't feel great all of a sudden, that's not what happened for me either.
Posted 12/19/2009 10:56 PM (GMT 0)
I have had four infusions at 10kg and still nothing. Just started Imuarn last week and hoping that will help me because the Remicade has done nothing. Hopefully it will work for you.
Posted 12/20/2009 3:37 AM (GMT 0)
Took us 5 tries. The 5th was a double dose. Hang tight for awhile to see if it can work for you. We almost were kicked out of the study( Remi for kids with Colitis, as it is not approved) and then, miracle of miracles-- the colon relaxed- normal function resumed ,and remission was the diagnosis. Katmom
Posted 12/20/2009 2:39 PM (GMT 0)
Hang in there.  I'm going for my 5th or 6th(I lost count.  I started the end of July)  on Dec. 23rd.  It took me about 3-4 infusions before I noticed any improvement.  I'm doing great now.  I go to the bathroom maybe 4 times a day.  Its not perfect but alot better then 15-20 times a day.  My urgency is not as bad either.  I still have to pull over when I'm driving when I have to go but I can make it to the bathroom.  Before I couldn't.  It was horrible.  I worry about the side effects all the time.  I'm only 30.  I'm scared to death about getting cancer or an infection.  But like you said my quality of life was horrible.  Now it isn't so bad(so it is worth it I guess).  I went on a field trip with my son the other day and I rode on the bus(it was only a 15 minute ride but still, I would never have done that before).  I hope remi works for you and you can have a good quality of life.  I would hang in there for awhile.  I think some people give up to quickly.  I told myself when I tried remi that I would give it a year.  Good Luck!
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