Infliximab dilemma

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New Member

Date Joined Feb 2009
Total Posts : 6
   Posted 9/9/2009 2:16 PM (GMT -6)   
Hi all ...
I have been on Infliximab for a year now ( just had my 7th dose) .. After the fifth infusion i suffered quite a lot of problems-- severe chest pain, my joints ached so much i couldnt move and then tonsilitus. This all went on for 4 weeks! I can honestly say i was in more pain than i have ever been with any crohns pain, and was on double the number of pain killers!!! My chest pain has never really gone... sixth infusion was ok feel pretty rubbish after it for about 2 weeks and then the 2 weeks at the end of the 8 week slot i have gain dreadful eczema and and eye infection.. I have had my 7th infusion yesterday and back to square one. joint pain chest pain i can walk aboout 200m and it took my 5 min to get my breath back! plus i now have a puffy face, plus my veins are collapsing and getting imflammation with every blood test.
Anyway after my waffling on....
I think ( confused )i have decided to stop the treatment . Im getting less of a quailty than when i was really ill...
I was wondering 2 things really ... Has anyone else had these types of problems, (im the longest person who has been on the drug at my hospital!) and has anyone stopped the drug to then go back on it later on. ...
Its a big decison as every drug i have tried ive had a reaction to but they keep the crohns at bay i think im gonna have to just take a chance... confused
Em x

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 9/9/2009 3:35 PM (GMT -6)   
Hi Em,

I have not been on Remicade myself, but many others on the forum have. Many who have had their luck run out with Remicade have been able to try Humira. Have you tried it yet? Sorry you are feeling so poorly, and I don't blame you for stopping it, I would too. Big Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Cookie's Wife
Regular Member

Date Joined Aug 2005
Total Posts : 299
   Posted 9/9/2009 5:38 PM (GMT -6)   

I was on it for 4 years about and stopped in 2005 (just started back on it due to a flare that I couldn't get under control.)  The only things I've experienced are risk of infection and my veins are bad.  My infusion nurse told me that if you keep starting and stopping Remicade often it loses it affect if you have to need it again.  I started back on it cause I've been on everything else.  Surgery was my next option and I'm not ready for that yet.

Good luck and I hope you start feeling better soon!

Don't be pushed by your problems. Instead, be led by your dreams. - Liz Sawyer


Veteran Member

Date Joined May 2006
Total Posts : 1177
   Posted 9/9/2009 6:50 PM (GMT -6)   
Has he done the prometheus antibody test? It will tell you if you have developed antibodies to infliximab - and that could be why you are having so much pain. In those cases, I believe switching from remicade to something else is the best course of action.

Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood

Veronica Ballerina
Regular Member

Date Joined Nov 2007
Total Posts : 69
   Posted 9/10/2009 8:47 AM (GMT -6)   
Hi emmaa1984, Sorry about that.

After my 4th infusion I started feeling a lot of pain in my hole body I used to say that even my hair ached, I couldn't walk, I spent most of my days in bed, because of the pain and also because I was always tired. In my 6th infusion I had a really severe reaction at the moment the infusion started, my throat closed and I could not breathe, I guess it got worst because I have asthma, I don't know, anyway they stoped the infusion and put me in O2, that was the end of Remicade for me.
I changed to Humira and I am on it since December 2008, I am feeling great, no reactions at all, as I used to be before I get sick!
Veronica Nunes - 27 years - Brazil

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