Has anyone NOT achieved remission with Remicade?

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Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 7/18/2008 2:59 AM (GMT -7)   
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 :-)
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran just decreased to 50mg (because of Shingles)
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 7/18/2008 7:02 AM (GMT -7)   
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.

Strat43z
Regular Member


Date Joined Mar 2007
Total Posts : 20
   Posted 7/18/2008 7:20 AM (GMT -7)   

  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.


potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 7/18/2008 11:50 AM (GMT -7)   
I did not go into remission with Remicade, but I did with Humira. Now I only take the Humira and 4 Asacol a day.

dreamer06
Regular Member


Date Joined Jun 2008
Total Posts : 221
   Posted 7/18/2008 12:27 PM (GMT -7)   
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.

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/18/2008 6:09 PM (GMT -7)   
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.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 7/19/2008 2:18 AM (GMT -7)   
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
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran just decreased to 50mg (because of Shingles)
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 7/19/2008 8:26 PM (GMT -7)   
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
turboemma.blogspot.com/


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 7/19/2008 8:36 PM (GMT -7)   
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.
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)

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