Infliximab dilemma

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 ( )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...

Thanks

Em x

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!

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!