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Remicade Experiences Anyone?

 
Posted by Past Member, on Sat Jul 04, 2009 5:02 pm
Am just wondering how many might be receiving that treatment or have in the past and what  experiences and thoughts might be on the subject Smile
 
Reply by polecat85, on Sat Jul 04, 2009 11:32 pm
Have been on it for three years now and so far has been a life saver. I have Crohn's and this stuff has given me full remission. I know there are people that have side effects, but I haven't experienced anything but being tired the day of the treatment.
 
Reply by Past Member, on Sat Jul 04, 2009 11:46 pm
                                 
polecat85 wrote:
Have been on it for three years now and so far has been a life saver. I have Crohn's and this stuff has given me full remission. I know there are people that have side effects, but I haven't experienced anything but being tired the day of the treatment.


That is so good to know!  I, too, have been on it for approx 3 years and so far so good.  I do know of a girlfriend who was on it for a year then had a terrible reaction but otherwise, most seem to do well........it's just still a little scary.....but what the heck, it has helped me too...immensely...and saved me from more surgery!
 
Reply by Past Member, on Sun Jul 05, 2009 8:20 pm
Hey Doe... saw the post and thought it might be you... i was on it  for about a year before i had my surgeries. It worked really well at first but then it stopped,.. of course i had U.C. and not Crohn's. It IS shown to work very well in Crohn's patients, but not as well for U.C. A friend of mine's sister here was on it for Crohn's as well and she is also in complete remission,(for about 7 years now!)  The worst thing that happened to me when i was on it were rashes on my face. If it's working for you then, that's a good thing... anything's better than going under the knife again, huh?
hope you're doing well
 
Reply by Past Member, on Sun Jul 05, 2009 8:21 pm
Hi

I hope everyone that is finding success with Remicade continues to do so.  Unfortunately for me, I ended up with a major reaction the second time I received it.  I got a "lupus-syndrome" from it.  Every joint in my body swelled, I could not move my hands or walk.  My liver enzymes were extremely high.  I had a high fever and was hospitalized.
 
Reply by beyondpar, on Sun Jul 05, 2009 8:30 pm
I was on it too Wounded.......And Yes i was a UC sufferer and dont know of any UC sufferers who have had great success....I do know it helps Crohns very much and there seems to be great success with it.........I can remember praying that it would help me and I remember the day Centocor(I think they were the makers of it) got it approved for treatment of UC.But as luck would have it it never put  a dent in my recovery.......I am now a permanent ileostomate and I love it............I truly have my physical life pback in total without taking one pill..............Wow.........Hope you are well.......Michael
 
Reply by Snowwhite, on Sun Jul 05, 2009 11:25 pm
Hi. Sounds like it seems to work for the majority. I was in Trials, studies, and when it was approved, took it again. It didn't work at all. However, with that being said, I have failed every drug, treatment, pill...you name it. I have Crohn's and approx. 5%of people do not respond to any treatments. Even having a permanent ostomy has brought up more issues.  Now the Doctor wants to give me Humara. Not sure if I will take it.
 
Reply by Past Member, on Mon Jul 06, 2009 12:12 am
Wow, I love hearing what you all have to say about this...thank you for posting!  Like I mentioned to a friend earlier today, at first we may have been victims of our health battles but we are now Warriors for surviving them...even as our battles continue .... it is amazing what we endure, both physically and psychologically,  we are all in the same Tribe.  No one outside of our circles here can ever fully understand what we go through.   Having contact with each other is a priceless thing.  Muah!  Smile
 
Reply by Cat, on Mon Jul 06, 2009 3:39 am
Remicade (in Italy also known as Infliximab) was successufull for me too. I had a six months treatment  after my colectomy surgeon, for Crohn disease, in 2004.
In 2006 I had an ileo-rectum surgeon, (I left my ostomy) and since there I keep on with immunosuppression, however I feel good now and I hope soon to stop with pills.
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