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Any experience with Remicade?

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Crohn's Disease
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Posted 6/17/2009 2:08 PM (GMT 0)
This has all been a whirlwind for me.  In March, I ended up in the ER twice.  The first time they had no idea and sent me home.  The second, emergency resection surgery with a complete bowel obstruction.  The Crohn's is already attacking where they cut and I just started Remicade.  I had my second infusion yesterday. 

What's your experience with Remicade?  How fast have you seen results?  I know what it's meant to do, but how about the symptoms like bloating.  My stomach is so distended and I hate it.  It's like every day I wake up and I'm bigger.  I have heard stories about people with crohn's and they have no apetite and they are skinny. I was hoping that would be one benefit, but not me. 

I am just hoping to see some type of hope soon.  It's depressing.

Posted 6/17/2009 3:48 PM (GMT 0)
Sorry to hear that things are so crappy lately. (no pun intended) I was on remicade for 6 & 1/2 years. LOVED it! It worked immediately (within 24 hours) for me. I only quit taking it because over time it lost effectiveness. Now I'm on Humira. I never had bloating with it. If you do a search on this site you will see plenty of threads on remicade. Hopefully that can give you some more insight to other people's experiences. I hope you get to feeling better soon!!!
Posted 6/17/2009 3:52 PM (GMT 0)
Its has worked well for me since Oct 2008 with no side effects apart from a few sinus headaches at first.

I know how you feel. I am over 4 stone overweight with crohns but at least I am not bloated now.

Posted 6/19/2009 12:43 AM (GMT 0)
Sorry to hear you're not feeling so well. I just started Remicade recently - February 2009 - and am still figuring out how I feel about it. It has worked for sure, but my doctor is still adjusting the dose and the frequency to get it just right. I know for me, going eight weeks in between infusions is just too long. I start feeling sick and extremely tired. But overall, I've been very pleased. Best of luck to you and I hope you figure out a routine that works for you!
Posted 6/19/2009 8:14 PM (GMT 0)
i was on remicade for 6 months. i probably gained about 2 lbs with every treatment. It was used as a temporary treatment for me to get me in remission & it worked fabulously. since being off of it, Ihave lost the extra weight & still feel great.
WEight gain was the only side effect i experienced
Posted 6/19/2009 9:44 PM (GMT 0)
I too experienced weight gain on Remicade. My doctor told me I was crazy and that the weight gain was not caused by the Remicade. My current doctor told me that of course it was related because I was feeling better so I could eat more. Makes sense. But I did get bloated from my remicade treatments. I also had a lot of joint pain.

I completely sympathize with your thought about being skinny with crohns, not me either. Part of my problem is that I am on steroids so often that I can't get my weight under control because I blow up on Prednisone.

Hang in there!
Posted 6/23/2009 5:38 AM (GMT 0)
I'm sorry. Remicaide did nothing for me and now I am on Humira. I guess it takes months to kick in and I have only been on it since April....Grrr...
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