Any experience with Remicade?

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New Member

Date Joined Jun 2009
Total Posts : 1
   Posted 6/17/2009 9:08 AM (GMT -6)   
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.
diagnosed with crohn's after a nasty obstruction and surgery in march 2009 - just started remicade - i look like a bullfrog, skinny butt and legs big tummy - makes me sad

Veteran Member

Date Joined Feb 2003
Total Posts : 1811
   Posted 6/17/2009 10:48 AM (GMT -6)   
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!!!

Regular Member

Date Joined Feb 2009
Total Posts : 269
   Posted 6/17/2009 10:52 AM (GMT -6)   
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.
Diagnosed 2005.
Current medication  -  infliximab infusions, ranitidine, ferrous sulphate, Vitamin B12 injections, asacol

New Member

Date Joined Mar 2009
Total Posts : 4
   Posted 6/18/2009 7:43 PM (GMT -6)   
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!
25 year old female
Diagnosed with Crohn's in August 2008
Currently on Remicade

Regular Member

Date Joined Jul 2008
Total Posts : 57
   Posted 6/19/2009 3:14 PM (GMT -6)   
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

Regular Member

Date Joined Aug 2007
Total Posts : 23
   Posted 6/19/2009 4:44 PM (GMT -6)   
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!
26 year old female
 Married to the most loving and supportive man
Just Graduted with my Master's Degree in Social Work
Diagnosed with Crohn's in 2004 after my gallbladder was removed 
Been on Prednisone, Asacol, and Remicade (became allergic to Remicade)
Too many flare ups to count
Been hospitalized five times in the past year (thank you morphine)
Had Bowel Resection October 1st, 2008 (18 inches of small intestine was taken out)
Currently in remission but still taking Imuran
Couldn't do it without my family, especially my mom
Have the greatest doctor in the world and will fight this disease til the end!

Regular Member

Date Joined Sep 2006
Total Posts : 237
   Posted 6/23/2009 12:38 AM (GMT -6)   
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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