Sputtering on Remicade, "here we go again" venting

I've only had 3 infusions but I am already re-flaring somewhat while on both pred and remicade.... I have of course seen some remi users post here that it took 5 or 6 infusions to get a meaningful remission, so as usual ("here we go again ") I guess I need to hang in there a bit- well unless I just bite the bullet.  But pummeling myself with all this chemotherapy has certainly got me thinking about throwing in the towel and going for a j-pouch.  However I would prefer to think about that decision from a safer, more stable place, not to mention not undergoing surgery with active disease.   Anyway, I did respond within a week and a half with some success on remi- it just wasn't that robust an effect and it certainly didn;t last 4 weeks.  Also, the sunflower butter on my spinach and sunflower seed diet attempt flared me, it seems.  And my doc is not upping my remi dose just yet but is thinking about it depending on how this latest infusion works or doesn't work.  I kind of miss my worms too... had some dampening from TSO (pig whipworms) for over a year, on and off, but it didn't prevent me from flaring as I tried to taper off pred either, it is horrendously expensive and not covered by insurance,  and I'd have to take it 'secretly' now as the docs are terrified of me being on TSO and biologics at the same time.  However, if it wasn't so expensive and still not fully effective for me, I'd pair it up with remi in a heartbeat.  Anyway, mentally i am trying to give myself a few more months to see how things go before moving into high gear on surgery... but I guess I should start l;aying some groundwork and interviewing surgeons at this point.

No scoping planned any time soon. Assuming I still have a colon to scope, which looks 50/50 at best, then I am going to wait until a year from my last scope (surveillenace) as they really do a number on me. If I can be in remission it may not be reflare me, but with active disease I know any scope is going to be a killer. If things settle down though (maybe it will take 10 mg/kg instead of 5) and I am able to get of pred, then I may get a fecal calprotectin test to check for active disease, as well as CRP tests that I do from time to time, in between. But really, for me it is all about symptoms, especially pain, or the lack of them.

Thanks Sue. yeah, I was active over on the (excellent) j-pouch.org site a year ago for awhile and then backed off while I enjoyed partial success with pig whipworms (TSO) but at this point I need to go back again and by all rights should be spending mroe time there than here (or at least 50/50). I learned tons over there mind you so I am already up on all the options, pros/cons, risks etc etc ... I just am trying to time this out not to declare Remi a failure too quickly. I would also at least try Humira and Refaxamin first before throwing in the towel, though I did get some initial response to Remi which is, perhaps, cause to wait a month more or so for progress.

I went into remission by the 3rd infusion but started flaring again after my 5th infusion and had to go back on pred. I've had 2 infusions since then and have noticed improvement but pretty sure that it's due to pred and not remicade. As I'm down to 10mgs of pred now I see things softening up again. I'm on the high remi dose too! Go figure. My GI feels that I may have built up a tolerance to it.