Vasculitis UK

pANCA positive, GPA and Anti-GBM (Goodpasture Syndrome)

Hello - my mother has pANCA positive, GPA and she has Anti-GBM disease which is named as Good pasture Syndrome. This has impacted her Kidney and she is on dailysis (twice in a week).

The damaged has been very quick for her, RPGN. Plasmapheresis 5 shots were done. Endoxon 5 times (15 days) have been done. Cyclophosphamide is also given. She is unable to get stable, any remission you suggest. I can send you the papers just in case you have a moment to see them please

Thanks Gourav (India)

+91 9717 961 482

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I think John has replied to your message .

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P-ANCA AND ANTI-GBM (GOODPASTURES)

I got sick end of March 2017, 2 days after my first XOLAIR shot. Docs thought i had pneumonia for 4 months, 100% right lung-75% left lung, no hospital ir bloodwork, just meds and nebulizer. Another Doc finally did bloodwork, I ended up in ICU for 15 days: eGFR 10, Creatinine 4.75. Lungs and kidneys = 2 ULTRA RARE Vasculitis Diseases = ANCA & GOODPASTURES. (March 2016 started Synthroid for thyroid.) In hospital, Nephrologist & Pulmonologist started Very Aggressive treatment: massive doses of steroids, 14 days plasmapheresis, and CYTOXIN chemo. Miracles happen as my eGFR is close to 40. Goodpasture in remission but Anca is not. Started Anti-Rejection Chemo/CELLCEPT. Immune system is low, trying to stay healthy and gave had such hard time breathing for months. Stopped taking B12, Centrum Multivitamin and Caltrate before a recent heart stress test. I've been breathing better but not all better. One day at a time...

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