I've so neglected this thread! However, that's a good thing overall as have had little to report on my end, until now
I've continued with 325mg of tylenol before my infusion and a 250ml bag of hydration after, which really helps with my fatigue the day of and day after.
While I've felt I'm in total UC remission, my CRP levels have been elevated since August which coincided with a bad back pain flare up and a nasty virus. However, it's been hovering steady since then. I've also been dealing with bleeding gums, mouth sores, more often colds and got the flu in December, a UTI (which I do not get, ever), elevated heart rate, and just a general sense that something is off in my body.
I was dreading my scope today as I was sure something would appear. But I'm totally clear! Of course, the biopsies may show something on the mucosal level but she seemed confident I'm in total remission.
We also ordered a Prometheus Entyvio test to see how effective the medication is at 8 week intervals, but I'm feeling like it's still working well at that interval, and don't expect a surprise there given the scope results.
So while I'm relieved UC is likely not causing the CRP levels and my general sense of inflammation/auto immune response, now I need to do some more exploring on causes there.
My GI did note that some patients have a slightly elevated CRP (we're talking around 1.5 which is where I'm hovering) with no clinical signs of anything. But as someone who wants to get pregnant, I will not start trying until that level is completely normal and I feel confident there isn't some other underlying issue.
I'll be seeking out a periodontist, cardiologist, and maybe a rheumatologist per my GI's rec (though I have no joint issue but wondering if my lower back pain is somehow related) just to get some non-GI eyes on these weird issues.
So that's my update! Will also follow up with results of Prometheus test to give folks a sense of where that is at after 5 years of Entyvio.