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Hi Patrick - whom are you seeing in UCSF?

Indeed - positive attitude is everything, sshiveley! Seems like the only thing we can have control over!
Good luck on your journey as well! Keep sharing!

Thanks for sharing your journey. It is indeed frustrating not knowing what to look for remedy and the unknown nature of what flares up when can be frustrating. I guess it helps each one of us to...

11/6 - Starting with Methotrexate (12.5/week) along with Prednisone currently at 40mg. Rheu is optimistic that I will be able to taper the Prednisone dosage. Anyone else on similar dosage? How was...

Hello All - didn't get a chance to come back to this wonderful family with update. 1025/19 - got my kidney stones removed, things went back to normal on blood tests (CRP, ESR etc) and MRI scans came...

tac - thanks for sharing. We indeed share commonality of onset symptoms and I am worried about what follows. Everyone seem to have different experiences regards to where it flares. Curious - what was...

tac - thanks for sharing. We indeed share commonality of onset symptoms and I am worried about what follows. Everyone seem to have different experiences regards to where it flares. Curious - what was...

Update 9/10/19: Had my kidney stones removed surgically - so one of the parameters is gone. Planned MRI of head and orbits planned followed by more tests I assume. Not knowing if its GPA and where...

Thanks for sharing your story, Shawni and I hope you get the right dx and be back well soon. I am going through similar period of unknown-ness and it feels important to get as many tests done to get...

My Rheu is still figuring it out. Its just me not wanting to continue on Prednisone (or any steroid) for long period if possible. I don't know what long means. Right now at 40mg per day.




Her...

Hi Anne - they have concluded that my kidney issue is different from the (possible) GPA issue which seem to have suddenly shown up at the same time. I am having surgery to get kidney stone out from...

I am going through a lot of blood tests, urinalysis, CT scans, MRIs ... just to get to know if its GPA, which organs are affected and then get away from current Prednisone to a non-steroid...

Thank you drz! Chasing the tests and various organs and meds for now.

Thank you for sharing your story, sshiveley. Indeed these initial days are very tough without knowing what the disease will bring every day. I am running through a lot of tests just to get to the...

Thanks Pete!

Thanks Andrew for your reply and for starting and maintaining this excellent forum. I have a follow up with Nephrologist today and will keep you posted.

Thanks Masha. Will check out Stanford Immunology

San Francisco Bay Area - anyone from here?

Hello All

I am from San Francisco area and recently have been told that I might have GPA. Came as a complete surprise from what I went through in last one month. Happy to have a "name" to my pains...