I stopped Remicade last fall; not because I just didn't want to, but because I've had very severe pain since six months after starting it and wanted to find out if stopping would alleviate that (it hasn't so far).
Within a few days past when my canceled infusion had been scheduled I began to have pains. I quickly changed my diet (eliminated raw veggies, most any dairy but cheeses). Still, I had pains. They were dull burning pains; the sharp pains subsided when I stopped the veggies. Anyways, my body was telling me I was one trigger away from flaring.
Then, I went gluten-free. Most of the dull pains stopped after a week.
I went on prednisone to try to help with the pain 2.5 months after stopping Remi, and as I've tapered off I've began to feel closer to flaring again, as my body began to depend on it for inflammation suppression.
So anyways, I'm 4.5 months with Remi completely out of my system, and my body has told me it wanted to flare twice already. But, as long as I keep things calm and healthy it seems to be okay. I don't know if this is due to the gluten-free diet, one of the meds I'm taking for pain (Tramadol... it also increases serotonin and I feel like this may help me), or just pure luck.
One other time I delayed Remicade an extra week and began to flare so bad that I was afraid to drive 20 minutes without soiling my pants...
Remicade sucks in some ways, as it is really potent stuff. Not wanting to be on it is understandable. Just don't make the decision lightly, and really consider all the possibilities if you have others depending on you for anything.
"The price of anything is the amount of life you exchange for it."
30/Male Dx UC 2003.
Have used: 5-asa's, 6mp, Remicade.
Used Remicade 1/27/12 thru 8/26/14
Presently: Off Remicade after 2+ years of chronic pain. No clear answers, but think was related to Remicade.
Presently: waiting until 2 weeks prednisone free, then going to do bloodwork and scans. Then head to Mayo if no clear answer.
Post Edited (Thoreau) : 3/16/2015 5:22:08 AM (GMT-6)