Quote Originally Posted by whatthewhat View Post
Lol, the minute I asked the doc to take a few deep breaths (and she didn't) I knew things were going south. It was a horrid appointment. Total clash of expectations on the dr/pt relationship, on both sides - and she lost her temper and did not in my mind retrieve it. By the end of the visit my daughter and I are both audibly weeping, I kid you not, and the doc never even comforts the kid her patient. So, no, not going back with this kid, but the thing about the doc not caring to see past lab work really threw me. I've learned so much about how this disease affects my daughter by reading her lab work over the past year, and it seems like watching it another year will give me even more info about her particulars. Also the doc said she basically just keeps an eye "on the main organ systems, ANCA a and PR3 can't tell us anything, really." Now, I understand statistics okay, and there is a difference between ANCA measurement is not solely reliable across the board and ANCA measurement never being helpful. It's pretty clear to me that her PR3 shot up before her flare began last fall. But that's something this doc would never know. I mean, I could be wrong, but the only way to tell is to give it time. I think.
It is true that there are some people that ANCA values do not correlate well with flares, but this is not the most common from the literature.
I would never totally disregard ANCA values and they don't use solely for treatment determination, but it is definitely, worth looking at along with inflammatory markers when someone has symptoms. For the kidneys, it is best to dip the urine periodically if kidneys are involved, but there is no test for the lungs. Lung problems can get really bad before we get treatment. This is why it is important to look all related factors.