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Anyone dealing with ANCA GPA Vasculitis?

Autoimmune Diseases | Last Active: Sep 28 8:53pm | Replies (24)

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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.

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Replies to "So sorry you have been sick for so long. So, you are ANCA negative and I..."

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.