Trying to learn more about what happens when ANCA and PR3 creep up.
After hospitalization in April/May and 3 months cytoxan, my ANCA was briefly negative. ANCA and PR3 crept up a little after that, and my doc (nephrologist) raised my prednisone. ANCA went slightly lower but is now high again, and PR3 is over 100.
My doc, whom I trust greatly, has always maintained that ANCA alone isn't enough to treat, but he has some concern that the ANCA and PR3 are rising. I don't really have any other symptoms going on, although I'm getting my eyes checked next week and if ESR goes up more (it's also up) I will have my ENT do a biopsy as I always have general sinus stuff going on it seems.
At my doc's request I went to a new rheumatologist today. She said she doesn't treat ANCA or PR3 changes, only symptoms. It was her suggestion to get the ears and eyes checked. I have been on azathioprine for about 5 weeks, and she also said that it's possible it just hasn't kicked in yet.
I like what she said, that monitoring ANCA only causes anxiety for patients (and I am living proof of that!). That said, I don't love the idea of waiting to see what happens.
What has your experience been?
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