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Has anyone NOT achieved remission with Remicade?

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Crohn's Disease
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Posted 7/18/2008 9:59 AM (GMT 0)
Good morning!  I was wondering if anyone has NOT achieved remission with Remicade.  I have been receiving it for two years, and am at the maximum dose.  It has helped me tremendously, but I have yet to achieve remission.  I am also steroid dependent.  I know "remission" is different for everyone.  I have good days and bad days.  I usually miss one day of work a week. eyes    I met with my GI yesterday who suggested Humira.  Any thoughts/feedback would be greatly appreciated.  Thanks!  Julie :-)
Posted 7/18/2008 2:02 PM (GMT 0)
I've been on Remicade since December, and achieved clinical remission (based on the IBDQ) for about 4 weeks.  That ended when I finished my Pred taper.  The guts aren't toooo terrible, but the joint pain and fatigue are killing me.  My Rheumy wants to pull me off Imuran and switch me to methotrexate, which I'm very skeptical of.  I need to talk to my GI and Rheumy about other options.  There's no doubt that the Remicade has helped me, but it's not been the magic pill I was hoping it would be.

Posted 7/18/2008 2:20 PM (GMT 0)

  I have received 6 infusions over the months and although it had helped a little, not until I had a severe flare and went on a 5 day Prednisone script did I reach "remission".

  We're talking a good 20+ years and after the Prednisone my GI suggested Entocort which has fewer side effects than Prednisone since it dissolves in the bowels and not in the stomach.

  I do not want to quit the Remicade, it is hard to get back on it once you quit, so I look at as "what isn't broken - don't fix".  Obviously, the Remicade and Entocort are what it takes for me and I would hate to quite Remicade to find the Entocort doesn't work as well alone.

  Try mentioning a maintenance med with the infusions with your GI.

Posted 7/18/2008 6:50 PM (GMT 0)
I did not go into remission with Remicade, but I did with Humira. Now I only take the Humira and 4 Asacol a day.
Posted 7/18/2008 7:27 PM (GMT 0)
I have been on Remicade since Nov. and it has helped with the bowels. Although it has never cleared up or healed the fistulas and abscesses that I have. I keep haveing problems with those. My GI has decided to up my dose to see if that works. But I definatly have not recieved remission from the remicade, I still have good days and bad days just like every one else.
Posted 7/19/2008 1:09 AM (GMT 0)
i began taking remicade shortly after it was approved for use in america. at that time it was thought you could only receive it once. this was well before double doses and using it as a maintenance med, where you receive it every 2 months. i was on it for years - it is what got me off prednisone. i felt better soon after an infusion, and stronger too with more energy and endurance. but i am now cynical about this med and i believe all it really did was mask symptoms. i say this because it is supposed to prevent fistulas. well i ended up need surgery cos while on this for many years, i eventually developed a fistula from my colon to my bladder. a colonoscopy revealed my system was getting worse - not better, even though i was feeling good. so i now think this med is junk in that it does not actually treat the disease, just symptoms. but then this is MY experience and MY opinion. i highly suggest for those getting this med to get colonoscopies regularly, even if you are feeling well, cos that is the proof - what your bowels look like. some people do swear by it, so who knows. you might as well exhaust all medicines to find out what works for you as there isnt a magic bullet that works for every one.

i haven taken this medicine since december 2006. at that time i began to build up antibodies to it and i wasnt getting the same response to it. the response was delayed and only lasted a few weeks, not months, so i was hurting before my next infusion. so i was lucky i stumbled upon the makers diet when i did.
Posted 7/19/2008 9:18 AM (GMT 0)
Thanks to all of you for the replies. It's nice to know that you're "not alone." I am checking into Humira. I am also going to do some research on the Maker's diet. Blessings, Julie
Posted 7/20/2008 3:26 AM (GMT 0)
Julie,

I am in the same exact position as you. I have been on Remicade for almost a year and only seem to be able to stay in remission while on prednisone. I got my last infusion yesterday and my doc actually doubled my dosage. I am also now on 15mg of prednisone (tapered down from 40mg) so we'll see how it goes once I'm off the 'roids. I'm being optimistic but will prob go to humira if remicade does not keep me in remission. My doc said that he has had a lot of his patients that did not go into remission with remicade but did go into remission with humira. Hope everything works out!

-Em
Posted 7/20/2008 3:36 AM (GMT 0)
Remission for me thus far has been elusive. I started with Prednisone to get the inflammation under control, and then immediately began Remicade. It helped, but I was never back up to 100%, and I'd have a roller-coaster style flare. I'd get better a day or two after the dose, then after a few days I'd get worse again. Eventually, after upping the dose and not seeing any results, I switched to Humira. Same thing. Now I'll be trying some drug that has a bunch of numbers for a name. Hopefully my guts like numbers.
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