Anyone dealing with ANCA GPA Vasculitis?

What type of therapy rid you of CPAN

@melodyanne Melody
I have what you have
I’d like to hear about your initial symptoms, tests used in determining it and treatments.
Thank you
Connie

@cjd19 I would love to connect. I was also diagnosed with GPA ANCA September 2025

@cjd19
So how are you doing? Don’t you feel blessed they found a diagnosis?
I didn’t realize I was so close to the end when they finally diagnosed it.
I’m on a 2 year treatment plan that includes: TAVNEOS, and 6 month Rituxan with steroid infusions, and a 3 times a week antibiotic as a maintenance to keep from catching anything.
I’m super cautious about being around the public.

Yes I have GPA. Diagnosed November 2023. Off work for 6 months. I am an operating room nurse. I had to cut my hours to three 8 hrs shifts a week. Ive had so much pain and fatigue it is definitely changing my daily life. I am learning how to be ok with my limitations. I just started PT. Tomorrow is my Rituximab infusion. I get every 6 months. I finally got off prednisone about 5 weeks ago. But it is hard. I may have to go back on it. I am under stress right now because my husband was laid off two months ago.

@amyeby1 Welcome to Mayo Clinic Connect! I’m glad you found this site to ask your questions. Are you off work now or doing shorter shifts? And does rituxan make any difference in how you feel? I also have an autoimmune disease and rituxan makes a big difference for me. I was an oncology nurse and know I couldn’t have done long shifts in nursing. Too much stress, too much running around, too much quick thinking, too much of everything! Have you spoken with personnel to see if there is a different, lower stress job in the OR or in the hospital?
PT should be good for you and walking will build up your stamina.
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/ This is another discussion you might want to look into.
Please take care and help yourself. We can’t afford to lose good nurses! Stay in touch with me—i really want to know how you’re doing. Becky

@raisedjay I was diagnosed in '21 with ANCA Vasculitis and began twice yearly Rituximab infusions. I am sorry for your struggles. So far, I am faring pretty well. I have been able to remain on only 5mg of Prednisone daily. I was also prescribed thrice weekly Septa antibiotic for life....to help guard against respiratory infections. I am blessed to have an excellent young lady as my knowledgeable rheumatologist. I am praying for you right now!