Me too - New GPA diagnosis. High Anca titer

[Gab122]

Hi everyone,
Here's my quick story.
In May 2016 I started having ear problems... Saw pcp, then ENT - no one could figure out what was causing so much fluid and pain. They tried antibiotics, yeast meds, ear tubes, even prednisone (which helped a bit) / 3 months later blood tests showed high inflammation. Further blood tests tested positive for ANCA.
A week ago, on Aug 1 I saw Mass General rheumatology dr's - leading experts an hour from my home! Thk you God!
They started me on 60 mg prednisone that day. ran ct scans, more blood and urine tests. My kidneys are not affected or damaged. But I have 5 granulomas in my lungs. and by Friday Aug 5 I was having a lung biopsy. my Anca titer came in over 1100! (Also 1:80) they told me I have extremely active disease but I'm limited GPA and an early diagnosis. Yesterday Monday Aug 8 I had my first Rituxan infusion. All within 1 week of diagnosis. I've lost some hearing and have some breathing problems, and am short of breath/ tired/ sweaty just folding laundry.
Anyone else have high Anca Titers like that. They said over 20 is positive for active disease. I have over 1100! I feel like I'm in excellent medical hands though and so happy to have a diagnosis that is treatable. Im glad I wasn't born 50 years earlier. Crazy different outcomes back then!
My faith and family are great support... Anxiety meds helping too. Rituxan infusion went well. Next one is Aug 25. MGH (mass genl Hosp) in Boston has been awesome in pushing for my speedy treatment.
Just wanted to reach out and learn more from everyone who's been on this journey for more than a week. I'm happy to answer any questions about my case.
God Bless,
Gab