Newbie to forum

[SherryJ]

HI Everyone, I'm SherryJ 11 years in to my GPA w/ 20% kidney function. Thanks to all of you, yesterday was the first time since 2007 where I realized I'm having a GPA flare up. Reading your posts have educated me greatly. Sadly, I have allowed my Nephrologist to manage my disease and just today contacted a rhumatologist to take the reigns. I'm saying prayers he will take me as a new patient!
I was in renal failure Nov. 2007; Creatinine 9, Hgb 7, dxd with GPA. I received 12 weeks of dialysis and my kidneys rebounded enough to be taken off.
Meds - was on Prednisone, Cyclophosphimide changing over to Azathyaprene. Since then my meds are limited to BP meds, Cholesterol and Thyroid, and lots of antibiotics over the years.
To date, just one kidney functions at 20% and no dialysis since Jan. 08.

Look forward to meeting everyone and thanks for letting me join you.

SherryJ

[Pete]

Hi SherryJ,

Welcome to the "club". I'm glad you found a rheumatologist. You may want to ask how many vasculitis patients s/he sees. This will give you an idea of expertise. If it's fewer than 20, you may want to have a consult with a vasculitis specialist. Here's a link to a list: https://www.vasculitisfoundation.org/mcm_resources/medical-consultants/ They will usually provide a free consultation with your local doctor. If one lives close enough, you may want to see if you can get a referral. I see Dr Alexandra Villa Forte at Cleveland Clinic (about 2 hours drive from Columbus where I live). She's been excellent.

Hope you have success getting competent medical care. Good luck!!

[gilders]

Welcome Sherry,
Your story is very similar mine. I was on dialysis shortly after been diagnosed with Wegener's (GPA). My kidney's also recovered enough to stop dialysis. That was 24 years ago. I am now at the stage where I need a kidney transplant.
Like you I was also under the care of nephrologist to manage GPA. That was until about 4 years ago when I wasn't managing to achieve remission and I'm now under the care of one of the main specialists in the world for vasculitis (Professor Jayne).

It's good to read that you don't need any immuno-suppressants at the moment. I hope that continues!

[Jaha]

Welcome to the most informative group of people, ever assembled on Wegener's information. I'm wishing you all the best with your journey and to get the best treatment s possible. Please keep us updated on your progress. Take care!

[BenHornsby]

Hi Sherry,

Welcome sounds like your headed in the right direction in the medical area and hope they help..

Ben

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