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Anyone dealing with ANCA GPA Vasculitis?
Autoimmune Diseases | Last Active: Sep 28 8:53pm | Replies (24)Comment receiving replies
I was diagnosed with ANCA Vasculitis MPO in January 2025. I was diagnosed with PMR in December 2020. After 4 years od treatment with prednisone with moderate success my symptoms expanded last year. I saw a new Rheumatologist who on reviewing my medical records found my ANCA level were "wildly high" . No follow up was done at the time. Further testing and clinical assessment confirmed ANCA vasculitis. Rheumie felt I'd done really well in spite of no follow up and added methotrexate to drug regime. Symptoms significantly under control . I feel so much better . I couldn't understand why I'd developed all these addional symptoms to my PMR and was being referred to various specialists for ENT, or lungs, who treated each issue in isolation with less than satisfactory results. Too bad other doctors didn't read my medical record. Glad to have landed on a correct diagnosis. Good luck with your journey. Be your own best advocate.
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Yes, we MUST advocate for ourselves. I honestly believe the only reason I got the right diagnosis after 9 months was because the nephrologist pulled in for consult had researched ANCA at Duke. He had biopsy of my kidney sent to Arkansas for confirmation. The mistake I made is only having solumedrol drip 3 days with oral prednisone, and then choosing Rituxamab inside of Cytotoxan for my first infusion. All the docs except the nephrologist said that Rituxamab was the best treatment. Should have used Cytoxan as I had a major flare in less than a week and that's when most of the organ damage was done. Then had 3 more days solumedrol, Cytoxan infusion, 4 units blood, 7 plasma exchanges, and another Rituxamab infusion before coming home 2 weeks later. I hope we both improve with the right treatments. I am taking Tavneos (avacopan) 30mg 2x daily and lots of other things. Have had Rituxamab 2x since hospital release and am scheduled again in December. Thankful for an appt in Sept at Mayo, Jax. Looking to live the best quality life I can. God bless you.