Posted 6/10/2021 4:57 PM (GMT -7)
PA-- I completely agree. Same here. I've NEVER had a GI not take biopsies. And I've had like 9 scopes now, I think. He told me right before the scope that he probably wouldn't take biopsies. My flare got 100 times worse after he scoped me in November, so I think he said he wouldn't take biopsies to try to reduce the chance of that happening again. But it happened again anyway... Well, and I'm now a week off of prednisone so it was bound to happen soon I've been steroid-dependent for a while now. But yeah, I don't know why he does half of what he does. I'm not seeing him anymore. There have been MANY problems with him and his office. He is a nice man, but doesn't seem to know what he is doing a lot of the time. The whole scope was totally pointless, in my opinion. I had just gotten off prednisone and I barely had any symptoms. Before the pred, I had lots of symptoms, so I feared the scope would look mostly normal. I wish I had refused it.
I'm not sure I totally understand your second comment. I've always been "asleep" during twilight. At least I never remembered a thing. Are we less asleep with twilight versus MAC? I guess I never knew. That's kind of frightening. I'd prefer they be more careful and go a little slower! The entire MAC flex sig only took 15 minutes from the time they took me out of my room to the time I got back in. I made note of the time on the clock when I left and returned.
Regarding the pred--Yeah, that's my understanding as well with the 2 weeks thing. I don't know why he told me that. I hate to make such long posts for fear of being super annoying so feel free to stop reading, but basically I've been on Uceris for 1.5 years now while trying all these biologics. Last September, I was trying Entyvio, and GI told me to continue tapering Uceris despite my symptoms returning and getting worse and worse. I eventually didn't follow his guidance and went back to daily Uceris but by that time, it was too late, and Uceris didn't help. He then scoped me in early November and I got really bad after the scope. I called the on-call GI who was his counterpart and asked if I should go to the hospital. He told me yes. I said are they just going to put me on steroids and can I just start pred at home? He said yes and that my regular GI would call in a script for me (I had some leftover at home). So I started pred and my regular GI wouldn't call any in for me. He told me "Uceris is equivalent to 40 mg prednisone. Go back on the Uceris." This was after me flaring on Uceris for over a month at this point! I had been on the pred for at least 3 weeks already and asked him if it's safe to just stop, and he said "I think it should be safe." I'm not even kidding. I think he was trying to help preserve my bone density, which I'm very concerned about too, but I can't just sit in the bathroom for 12+ hours a day and suffer in immense pain either.
And then he basically said the same thing just a few weeks ago when I was on Uceris daily, got my Moderna shot, and started flaring despite Uceris. He told me just "give it a few weeks." I made it 2 weeks and kept getting worse and told him I can't wait anymore, I need prednisone or to try Xeljanz or something. So then he told me ok, you can take some prednisone. But then he scheduled a scope 3 weeks into my pred course, and I asked if we'll still be able to see anything and if a second scope in 6 months is really warranted, and he said "Can you try to stop or reduce the pred by then?" So I did a super fast taper which I don't think was good for me just in hopes he'd see I was actually sick in this scope and let me switch to a med that might actually help me... I have had a migraine every day for the past 8 days that started the day I stopped prednisone and I'm wondering if it was from the super fast taper. I don't know. But it's been scary. That's not normal for me and that's what I'm seeing my PCP about tomorrow. It goes away with my migraine med but then comes back. Today it has stayed away so far. I've also been insanely stressed out trying to decide about surgery and stuff.