Does anyone in this group have GPA ANCA

Yes

What do you use to treat it?
How long have you had this desease?
I’ve had steroid infusions, steroid pills, Rituxan infusions and am also taking Tavneous.

I have been on prednisone and Rituxan for it. I was also on hydroxychloroquine but had rash issues and it did not seem to be doing much except make me feel crappy. We are going to wait and see how I do with just Rituxan.

I appreciate your response. May I ask, how long ago were you diagnosed with GPA ANCA?
What symptoms you had and if you had a liver biopsy done for a complete diagnosis or was it mostly through blood work?
I was diagnosed last September.
I was sleeping 19 hours a day. I knew something was wrong but each doctor shared I had inflammation and infection but no one knew what was causing it. I had several episodes of shaking, chills, and also stroke like symptoms. 8 day hospitalization. However again no diagnosis.
I felt extremely blessed when a diagnosis was finally discovered.

@cjd19 I had terrible fatigue and pain everywhere. Also dry eyes, dry mouth and a rash for a year or more. My doctors just shrugged it off because my labs were normal. Then I was looking for options for osteoporosis and wanted to see a rheumatologist in light of my pain. I had a negative RA and my doctor told me I would not been seen by their rheumatology department because of it. I found a rheumatologist and said he was confident I have sero negative RA. He did more labs. I went to a different dermatologist for the rash and found out it was lichen planus on my legs and torso. My labs came back positive for SSB and ANCA PR3. Which was kind of a surprise because they were very high! I was already on hydroxychloroquine for RA…helped some for both RA and LP. My rash disappeared after a couple Rituxan infusions. I was miserable on the prednisone and finally got off it after 6+ months. But I still didn’t feel awful. Then I developed a Vasculitis like rash. We decided to stop the hydroxychloroquine and will have two more Rituxan infusions next month…I was hoping for sooner but they are booked until then. I have pain but the rash is much better and I feel so much better. I am hoping the Rituxan will make a big difference by itself because I don’t really want to take more drugs!

It is so difficult for them to get a diagnosis.
At the beginning my white cells were high forever and all they did was tell me they’d test again in a few months and then again and then again.
I pray you get the help you need. Don’t give up and call often to see if they have any cancellations to see if they can get you in sooner for your Rituxan infusion.