May have to go off Remicade - how do I know for sure?

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Regular Member

Date Joined Oct 2005
Total Posts : 129
   Posted 5/26/2010 6:33 AM (GMT -7)   
Hi everyone, it's been a while since I posted! I've been on Remicade 3+ years and had a great experience. Seems lately though that it's wearing off and I think I'm flaring again.
I'd love to hear from anyone who was on Remicade and then went on another medication - what did you go on and how was the transition?

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 5/26/2010 8:08 AM (GMT -7)   
I have not been on Remicade, but thru the forums have seen many go from Remicade to Humira as there next stop med. Have you thought of asking your doc to have your Remicade infusions closer together. i.e. If you were getting it every 8 weeks, maybe changing to every 6 weeks. Just a thought!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Feb 2008
Total Posts : 298
   Posted 5/26/2010 4:54 PM (GMT -7)   

The same exact thing is happening to me right now. It's so frustrating! I see my doc on Tuesday, so it'll be interesting to see what he says. =(

I hope you feel better soon!

Veteran Member

Date Joined Oct 2009
Total Posts : 1070
   Posted 5/26/2010 5:38 PM (GMT -7)   
Ditto Nanners plus, Can they increase the dose?

Veteran Member

Date Joined May 2006
Total Posts : 1177
   Posted 5/26/2010 7:03 PM (GMT -7)   
I think Remicade just reduces the number of flare ups you have, it's no guarantee that it will keep all flares away. I've heard of people on Remicade who have to take a short course on steroids to bring things back under control, or add another maintenance med like methotrexate or imuran to the mix to make remicade last longer, and perhaps also adjust the dosage or remicade or the frequency.

You can also try switching to Humira, but it may be better to try something in addition like MTX or imuran.

I hope you can stop this flare soon.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission

Regular Member

Date Joined Oct 2007
Total Posts : 390
   Posted 5/26/2010 7:25 PM (GMT -7)   

I was on Remicaide and it stopped working when I developed antibodies to it - there is a test your dr can do to see if that's happening.  That was a few months ago and I am now on Humira - I just finished my prednisone so hopefully the Humira works!

Good luck!

33 yr old Female
Crohn's Colitis
DX 12/06
Humira, finally just finished weaning off 60 mg of Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, Omegas, a few other herbal supplements my natureopath has me on.
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 

Veteran Member

Date Joined Jan 2006
Total Posts : 730
   Posted 5/27/2010 10:21 AM (GMT -7)   
I went on Remicade in 2002 at 500mg. It worked wonders until 2005 when it was like someone just flipped a switch and it stopped working. The GI upped me to 1000mg, and it worked great again.

Might need to talk to your GI about changing the dosage, or reducing the time between infusions. What you are going through happens to some of us. Hang in there, and like others have said, there are other options now.
Matthew McKenna,
Joey's dad.
Crohn's Disease and Guillian-Barre' Syndrome.
Remicade, 6MP and a few of their friends.

"I'm just along for the ride."

Regular Member

Date Joined Oct 2005
Total Posts : 129
   Posted 6/1/2010 8:38 AM (GMT -7)   
Thanks everyone SO much! This is so helpful. I am going to discuss all of this with my doctor. This gives me a lot of hope.

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 6/1/2010 9:27 AM (GMT -7)   
We tried every 6 weeks for me and it helped for a little while, but again wore off and then I started having allergic reactions.  I went on Cimzia when I stopped Remicade and I just had to wait the normal 6 weeks in between the two.  There were no problems switching and the Cimzia had kept my Crohn's in remission until the last few weeks (I did switch to Humira for about a year in there somewhere as well).  Hopefully, if increasing the frequency doesn't work for you, switching to something else will go smoothly and work better. 
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

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