Anyone dealing with ANCA GPA Vasculitis?

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.

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.

So sorry you have been sick for so long. So, you are ANCA negative and I am ANCA positive. Mine has attacked the vessels in my ears, sinuses, eyes, lungs, and kidneys. I am taking Tavneos (avacopan) 2x daily and my numbers are looking better, but I have read that you must consider symptoms also when deciding if the disease has gone into remission. I am praying for no major flare again. Not sure my body could tolerate it. But in that light, I am trying to live the best life I can. Blessings to you.

Thanks for reaching out. I'm only 3 in 100,000 - common compared to you. Going to look up CPAN. How long have you been diagnosed?

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.

@melodyanne I was diagnosed in 2015. It appears to be gone now…

Did you take any special medications or any particular diet?

Thank you. I will take all the blessings I can get. In spite of being sick for a very long time, up until October I was working full time as a Physician Assistant in a very busy urgent care and doing pre-anesthesia testing at the local hospital. In October I got C-diff colitis secondary to antibiotics being prescribed for chronic recurrent UTI. It all went down hill from there. I ended up with a ruptured bowel, that was not healing properly due to recent high dose prednisone. It was followed by 6 abdominal surgeries in a 12 day period. I spent many weeks in ICU total time in the acute care hospital was 2 months then I went to an acute care long term rehab for two months. At the end of December I was so weak I was not able to walk, I was receiving IV nutrition because I could barely eat. I finally was discharged the end of Feb. I went home with walker, wheelchair, and 18 hours a day of IV nutrition. Fast forward to today. I went to the YMCA this morning and worked out in the pool for one hour. I still have not returned to work and was denied disability. I am fighting that, just playing the waiting game now.
My hearing is such that I am receiving hearing aids on Wednesday. But I feel so blessed to be walking and talking on this earth right now.

@melodyanne I took prednisone for 8 months.