Looking for support with ANCA Vasculitis and RPGN kidney disease

Hi I’ve been diagnosed with ANCA Vasculitis that has caused RPGN kidney disease!! Does anyone deal with Vasculitis and how are you doing??

Your answer

lac

2y ago

That's just it. I just take it day by day. Some worse than others. My antibody assay, myeloperoxidase result was 184(normal0-19). P-anca pattern. Not sure if this means anything to you. My nerologist calls it a positive vasculitis test and sent me to my rhematologist. She has done nothing. I've been waiting for three months to get into a doctor second opinion. From what I read I need biopsy done and treated in order for any hope for remission. How long did it take for your diagnosis and what should I be asking to be done? My kidney doctor does not want to do a kidney biopsy because I have kept my kidneys stable for 3 years at stage 3 and they fear a biopsy could do more damage. Thank you for any thoughts.

BellaDonna978

2y ago

I was diagnosed with RPGN with a creatinine of 8, nephrologist had to do a biopsy to confirm this. I was told Vasculitis ANCA was the culprit. I don’t 100% know about it, but I know I’m hurting back, hands and knees. I took Rituximab infusion to help put me in remission. It’s given every 6 months

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