Remicade failing and so is my spirit

I can't really talk to remicade or humira as I haven't taken them, but after recent failures with Imuran, 6MP, and most recently sulfasalazine (though I guess you can add Lialda to that as well, since it stopped working too), I can definitely understand how you feel.

It's hard to not worry, but the way I see worry is like this: worry is like a rocking chair. You can rock all you want, but you aren't going to get anywhere doing it. (I know, hard to stop worrying in the situation, but try to distract yourself as much as possible!)

Don't worry just yet! Call your dr, and talk to them. I don't know much about remicade, but it may just be that it's going to take a few days for it to completely heal the sores in your mouth. So, take some deep breaths, and know that we are all here to listen and support you. :)

I feel the same way. I am a medical failure and nothing is working.

Hi bamagrl.  Sorry to hear you're feeling so crummy.  I am in the same boat as you are.  I am on my second round with remicade as well.  I was on it the first time back in 06 and I did was on it for about 6 or 7 months and I stopped responding to the treament and was taken off.  I have also failed humira and cimzia.  Been on methotrexate, 6mp, azathiprine, asacol, apriso, steroids, antibiotics, azulfadine, colazol....you name it i've been on it.  Currently I'm on remicade again.  Started in march of 2011.  Going on a year now.  After the loading dose I went to the 8 week intervals.  After a few months I was switched to every 6 weeks.  At around the 4 week point post infusion, I start to flare.  D, pain in my stomach, and I start to have sores in my mouth, swelling lips and gums, and difficulty swallowing.  I also flare in my mouth.  I had a remicade anitbody test done and it showed that I do not have antibodies to the remicade which is a good thing so then why do I feel like complete crap?  It's horrible.  I know exactly how you feel.  Now it's being suggested I try either tysabri (not happening), steroids (again), clinical studies, or taking 6mp along with the remicade.  It's so frustrating and sometimes it feels like nothing will ever help.  I hope something works for you and you start feeling better soon :)

Thanks everyone- my doctor said I should get the Remicade every 6 weeks now instead of 8- I just hope this isn't the beginning of the end of Remicade working for me- fingers crossed!