Anyone dealing with ANCA GPA Vasculitis?

@melodyanne
Vasculitis in general is not common.
I have had Vasculitis, Cutaneous Polyarteritis Nodosa (CPAN).

I have never found anyone else with that on here.
The reason is because it’s very very rare. Three cases in a million is tough.

Wishing you all the best.

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?

My Mom passed away from Rheumatoid vsculitis, she was not diagnosed till she was 80 years old and had big open sores on her ankle and legs but every doctor even her Cardiologist told her "you;re just getting old" I demanded they test her for Autoimmune disease and 2 weeks later she had a diagnosis and high doses of Prednisone but passed away a few months after. Now I am having the same symptoms, burning legs, insomnia, chest pain and horrible depression but my Rheumatologist is hesitant to give a complete diagnosis, I have RA and Sjogrens too and all the medicine I've tried made me sick, good luck with getting fast answers but I wish you well.

Condolences on the loss of your mother. I am thankful you were adamant about getting her diagnosed. So often, we do not know what diseases have run in our families to be aware of. One very important reason that I am doing as much research as possible into what I have so that my children and grandchildren can have the information. God bless you, and prayers for you on this medical journey.

I have ANCA negative vasculitis Cogans syndrome. I was diagnosed about 18 years ago have been on many different treatments. I will go in remission then tend to creat antibodies to the meds. Just recently was diagnosed with Autoimmune Hepatitis and Primary Biliary Cholangitis. They. Currently have me on Ursodiorl high dose methylprednisolone and was started on azathioprine. They will try and increase the azathioprine next month and hopefully can decrease the steroids.

I was diagnosed with Anka Vasculitis in 2023. With the support of an amazine medical team and doing exactly what I was told to do(regarding exercise) I have recovered. Now am on a low dose of aziothioprin (sp) . Unfortunaately the nueropothy lingers but am grateful that I am no longer suffering. Swimmng 2 days a week and walking at least 10,000 a day.

I was diagnosed with ANCA Vasculitis MPO in January 2025. I was diagnosed with PMR in December 2020. After 4 years od treatment with prednisone with moderate success my symptoms expanded last year. I saw a new Rheumatologist who on reviewing my medical records found my ANCA level were "wildly high" . No follow up was done at the time. Further testing and clinical assessment confirmed ANCA vasculitis. Rheumie felt I'd done really well in spite of no follow up and added methotrexate to drug regime. Symptoms significantly under control . I feel so much better . I couldn't understand why I'd developed all these addional symptoms to my PMR and was being referred to various specialists for ENT, or lungs, who treated each issue in isolation with less than satisfactory results. Too bad other doctors didn't read my medical record. Glad to have landed on a correct diagnosis. Good luck with your journey. Be your own best advocate.

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.

Yes, they have told me to "do", but not overdo. There major flare I had set me back quite a ways and I am working to regain strength and stamina. My numbers are better, but I still have hearing loss, lung and kidney damage, and neuropathy. I am praying for some recovery as I have already seen improvement in my kidney function from 11 to 45. Keep on, friend! My theme song has become "Eye of the Tiger"!

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.