Not at Mayo, but jumping through some hoops for insurance. The doc I saw is in the same office as my other one. As a bit of history, I saw my regular rheumy in Dec. I got done telling her that I was still really fatigued, my hearing fluctuated, eyes and face hurt, etc. She told me I was asymptomatic and that I should again try to taper the prednisone. I was pretty frustrated.
I'm hopeful that maybe I'm on the right track. This doc came highly recommended. He was pretty cool, and very knowledgeable! He walked in with a handwritten sheet of paper - notes he had taken from my chart and wanted to discuss. That in itself impressed me. I didn't have to start over at the beginning and go through everything.
He also didn't discount all my "symptoms". I put that in quotes because the other one didn't think they were considered symptoms last time I was in... So we went over everything, got to the end and he says, "I can't definitely call this Wegeners, however, whatever this is, we need to be a bit more agressive". In particular, he was really concerned about the sight damage I've sustained. So, still no diagnosis.
He did up me to 25mg of methotrexate (I was at 20mg oral) - and put me on the injections. I started that on Sunday night. Wigs me out a bit, but I'll get used to it. He also took a TON of blood for bloodwork.
I just got a note from him and the test results. Funny, everything isn't in my head! I am SO relieved!!! Here's part of what he said:
"The recent tests revealed a still borderline or equivocally abnormal MPOantibody of 0.7 (the equivocal range is 0.4-0.9) and the p-ANCA was stillpositive or abnormal. The inflammatory marker C-reactive protein was elevatedat 22 (normal range <=5.0), which may very well reflect ongoing diseaseactivity."
It's interesting that the MPO hasn't gone down much (I was at 0.9 when this first started) and that the p-ANCA is still there. As for the C-reactive protien? Yeah, I've never had one done. And he and I think I should have. So...
He's going to see how the higher methotrexate (injections) work for me and if I start feeling better. He's also stopping the prednisone taper, but doesn't want to raise it unless I start feeling worse. I always have issues when I go down from 10mg. I'm at 8, but struggling. We'll see if the methotrexate helps.
I'm giving it the 3 months he's asked for, then we'll talk about Mayo Clinic. (This doc did his residency there - and knows a lot of the staff in rheumatology.)
I'm just SO relieved that I'm being taken seriously. And that all this stuff isn't in my head.
Thanks for "listening". Jen
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