MPA Anca Vasculitis

It sounds awful and I'm sorry you have gone through so much. I have EPGA and microscopic polyangitis, vasculitis. I bave neuropathy in feet and hands, I think it is part of vasculitis. I first had asthma which was manageable, then came neuropathy, I've had arthritis for a while. My doctor said those were all signs of vasculitis. It can effect everything. I would see a good rheumatologist.

I also have nerve damage from EGPA and am on prednisone while waiting to try Nucala, a biologic to try to lower prednisone use. You need a good Rhumatologist who is aware of these rare diseases. Many doctors never see a patient with this and misdiagnose. Keep looking and find one!
Best wishes.

@donnajm Have you tried contacting. The Vasculitis foundation?
https://www.vasculitisfoundation.org/
My sister also has ANCA vasculitis and she is on rituxan infusions and doing very well. I’ll try to have her respond to you. If you think your doctors are not being helpful and/or don’t really understand your disease, you can try one of these organizations:
GARD, the Genetic and Rare Disease org. : https://rarediseases.info.nih.gov/
NORD, the National Organization for Rare Diseases: https://rarediseases.org/
These diseases cause all of us to be confused! And the names of the drugs! Were your first years better than now?

Does your healthcare provider have experience in managing vasculitis? If not, can s/he refer you to someone who does? From your brief description, of symptoms, I suggest you need to see someone sooner than later. As recommended in a comment on this page from my sister, Becky, contact https://www.vasculitisfoundation.org/education/research-institutions/ to see if they can help find a healthcare provider experienced in managing MPA vasculitis. There is also a very active Facebook group for people trying to cope with this disease: Microscopic Polyangiitis (MPA) Community. Having this disease is a drag, so please let me know if I can provide more information.

Hello,

Are you being followed by a Rheumatologist who specilaises in Vasculitis? If not, I would start there. Research the large city centre hospitals in you area and look for a Doctor who specialises in Rheumatology and/or Vasculitis, then ask your current doctor, or your family doctor to refer you to them.

As the other poster indicated, this disease is rare. I was under the care of a local Nephrologist and he completely missed the symptoms. Thankfully my Rheumatologist disagreed with his approach and she recommended me to a Nephrologist Clinic in my City Centre Hospital, who specialises in Kidney , transplants etc. Within a couple of weeks of testing, this new Nephrologist directed me to go straight to emergency, where they were waiting for me. I was in complete kidney failure. The Vasculitis had destroyed my kidneys. I had emergency dialysis that night, and ended up being hospitalized for 40 days to recover and receive the Rituximab infusions to the point that I could go home. These treatments put my Vasculitis into remission, and today (2024) I'm still in remission, but followed closely.
Best of luck.

Vasculitis and peripheral neuropathy (PN) go hand in hand. I would suspect the PN is causing the hand, feet pain and vertigo, dizziness. You need a neurologist for the PN and a rheumatologist that specializes in vasculitis. Please consider going to a university teaching hospital or special clinic like Mayo where the best physicians can help you in the least amount of time. Mayo typically sees patients for a week with multiple disciplines weighing in on your case. You have a rare and serious disorder and your typical dr may know little about it. Good luck. You have gotten excellent advice here!