Posted 8/18/2014 2:22 AM (GMT 0)
Hey T - I'm still seriously considering Entyvio, so eager to read here what folks are experiencing. At this moment I'm in wait-and-see mode while my body regains resilience after the adverse Remi reactions. Feeling a bit better each day, and tapering pred. No sign of a flare yet. (Trying not to stress myself into causing it....) My last Remi infusion was in May and I'm flying without a net, so to speak. It's scary to have nothing right now. But Entyvio is for induction and maintenance, so I know I can do that, if a flare starts.
I agree with you - maybe even feel more strongly - and see surgery as a way last resort, and there's no turning back if a new treatment becomes available. There are other several drugs under development too.
I'm not going to try Methotrexate. It showed moderate to poor response for us UCers, as a mono therapy.
I'm glad 6mp helped you. It did nothing for me when I tried. It was like Uceris for me - zero help with bad UC flare. (I had switched to it after prednisone, which also didn't help the flare.) 6mp also gave me high fevers that started a few days into it. It's tough to work with a constant fever (btw 100 to 102 degrees over the course of each day!). I stuck with it (6mp) for five weeks, ever hopeful. And then I just gave up on it. And turned to Remicade.
You could do 6mp with Remi. It's commonly done, my GI said. Either 6mp & Remi, or methotrexate & Remi, and the dual therapy reduces the time that Remi for antibodies form. I just did the Remi as monotherapy. I remember them saying that it whacks your immune system to do both, so be super careful about staying away from sick people and washing your hands.
It sounds like you may, like me, have these pains--not due to the antibodies (you were negative, right?, and I ended up testing positive but way after the joint pains) and it could be adverse reaction they are seeing in the whole class of Anti-TNF adverse reactions.
Happyday asked for a list of tests they did to determine this, so rather than take over this thread about Entyvio, I'm going to go back to my earlier thread - severe joint pains, stopped remicade - and will add all that info to it. Maybe it'll help in your diagnosis, so you know which meds you need to avoid or might try next.
Please keep us all posted. I'll be sending positive thoughts your way -- to you, Happyday, Soy, etc - including those already jumping in with Entyvio.