Has anyone else not been able to take Remicade?

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d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 8/15/2008 10:53 AM (GMT -7)   
I got an infusion 1 year ago.  It was my 2nd.  The 1st one was too hard on me so we waited a couple of years.  On this last infusion I was bedridden the next day.  I was so weak I could abrely move in bed.  My shoulders and jaws were red hot excruciatingly painful.  I had a fever of 101 (my temp is 97.7), I passed out cold going back to bed from the bathroom.  This was the worst time I have ever had.  I was still having various issues for 2-3 months afterward.  I felt so horrible.
 
Everyone else seems to get through it relatively well.  I don't get it.
150mg Azathioprine
Lomotil
Iron
Nexium 2/day
Fentanyl patch
Oxycodone
Baclofin
 
Crohn's, Fibromyalgia, Several bad discs, bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Stricture
2 resections
 
Stephanie
 
When I am weak, then am I strong


br4d
Regular Member


Date Joined Feb 2008
Total Posts : 71
   Posted 8/15/2008 11:07 AM (GMT -7)   
holy crap dude! your body hates the 'cade for some reason. did your GI look into why you reacted in such a manner?

i've only had 2 infusions so far but they've gone without a hitch and i'm noticing better BMs and the ability to eat things i wasn't able to without major problems before.

best of luck to you!! def ask your GI about alternatives or possible causes. remicade seems to work well for many. hopefully you can be one of them!
.:brad:. 23 year old male from PA.

diagnosed with crohn's disease in april 2002 during surgery for obstruction
meds: 10mg prednisone, tapering. starting remicade july 30th. no more 6MP.


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 8/15/2008 4:27 PM (GMT -7)   
WOW!! Sorry to hear it did all that to you. Glad your ok now though. I'm also a Remicade failure. I only had 3 infusions and the last one landed me in the hospital for a week with a bad reaction. Makes me really scared to ever try Humira or the others.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 15mg and stuck
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin twice a day
                           Cipro
No Surgeries
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/15/2008 4:29 PM (GMT -7)   
Yup, I'm another failer. Three wonderful infusions in 2004, a 2 1/2 year break (!), then a horrible reaction after reinfusion in 2007 that landed me in hospital for a while.

It's upsetting and scary, Stephanie, but I hope it helps you to know you're not alone.

Have you tried Humira?
Co-Moderator Crohn's Forum.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/15/2008 4:35 PM (GMT -7)   
umm yes I had a some what similar reaction to remicade. I would suggest you have at least an ANA test done, for lupus like syndrome associated with remicade.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 8/15/2008 4:48 PM (GMT -7)   

Allergic reactions to Remicade are really fairly common, probably because it has mouse-derived proteins in it which your immune system may react to. Many people who don't tolerate Remi can use Humira, because it's all human-derived.


Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 8/18/2008 9:54 AM (GMT -7)   
Thanks guys for letting me know I'm not alone here!

An ANA test MMMNAVY? Is there some connection between the Remicade reaction & Lupus (or Lupus like diseases)? I've not heard of this. Would you mind telling me more about this?

br4d, no. My GI did not look into it at all, that I'm aware of? Should he have?

As for Humira. I'm pretty much afraid to try it now, to be perfectly honest. Thanks again. I appreciate your support.
150mg Azathioprine
Lomotil
Iron
Nexium 2/day
Fentanyl patch
Oxycodone
Baclofin
 
Crohn's, Fibromyalgia, Several bad discs, bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Stricture
2 resections
 
Stephanie
 
When I am weak, then am I strong


br4d
Regular Member


Date Joined Feb 2008
Total Posts : 71
   Posted 8/18/2008 12:09 PM (GMT -7)   
ack! you guys are freaking me out. i have my 3rd infusion on the 9th of sept. my first 2 went fine though.
.:brad:. 23 year old male from PA.

diagnosed with crohn's disease in april 2002 during surgery for obstruction
meds: 10mg prednisone, tapering. starting remicade july 30th. no more 6MP.

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