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Remicade not working

Wed, September 07, 2016 4:09 PM

My son (33 yrs age) has had UC for 14 yrs is now on remicade for last 5 months and does not seem to be having any benefit so far. He is also on 20 mg of prednisone. He had a flex-sig recently and his doc stated that the UC may be becoming Chron's. Is such a change in disease classification possible by remicade? Any one who has taken this drug and not benefited by it, what kinds of negative things happened, if any?


FPO upa1953
Joined Feb 21, 2012

Tue, March 14, 2017 7:01 PM

Reply posted for upa1953.

I'm on Remicade at the moment, but it's working for me.  The drug will definitely not help in the diagnosis one way or the other.  But I know from several other people at our support group that the diagnosis is not always 100%.  Someone with Crohns but has only ever had symptoms and colonoscopy that shows disease only in the large intestine runs the risk of misdagnosis.  It's not that it becomes Crohns but that it just looked like UC because the colon was all that was active.

Either way, the meds and the treatments are mostly the same, that's why they are both grouped together as "IBD".  Good luck to your son.

FPO gcrawford
Joined Mar 14, 2017

Sat, January 07, 2017 1:15 AM

 Reply posted for upa1953.

Sorry to hear about your son's struggle.  I got UC when I was 15.  It went into remission when I was in my 20s then came back with a vengeance when I was 30.  Eventually I had  Koch Pouch surgery, which was the best thing I ever did.  I'm going to share my experience...hopefully you'll be open to it.  I strongly believe that my remission in my 20s was due to my use of marijuana.  When I went back to college at 30, I stopped using it.  That's when the UC came back.  With a Koch Pouch, you can get inflammations (e.g., pouchitis), which are pretty uncomfortable. I could control it with antibiotics.   When medical marijuana became legal in my state, I tried it again.  I haven't had an inflammation now it about 3 years.  I'm 65 years old and definitely not a "stoner."  I only use marijuana right before I go to bed at night.  It has made a world of difference.  Don't expect doctors to recommend it as they  are pretty conservative, and there hasn't been a lot of research on it due to the legal restrictions.  All I can tell you is that it works for me.  It also has worked for several friends of mine who have suffered with similar medical issues.  You can do some research online.  It is not the evil drug the govt has professed it to be.

FPO indialogue
Joined Nov 29, 2014

Sun, November 13, 2016 4:24 PM

 Reply posted for upa1953.

I&#39;m on Remicade&nbsp;for a year and a half now and I don&#39;t think it&#39;s doing any good, but no bad side effects.&nbsp; I had ulcerative Colitis and the only thing that helped was prednisone, but the side effects of that drug were terrible. &nbsp;I eventually had my colon removed and a j pouch put in. I kept getting pouchitis, and after testing, turns out I now have Crohn&#39;s&nbsp;disease. &nbsp;In my opinion, Crohn&#39;s&nbsp;is bad but, colitis was worse.<br /> &nbsp;&nbsp;

FPO charbs
Joined Oct 31, 2016

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