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.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 17.5 15 mg pred, 100 mg Imuran
TCM, Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie