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Thread: New Member from Philadephia

  1. #1
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    Smile New Member from Philadephia

    Hi Everyone,

    I was diagnosed with GPA in October 2014. I first started noticing mild symptoms about 2 1/2 years ago. The symptoms started to become significantly worse about 2 months ago. Some aggressive doctoring on my part resulted in my recent diagnosis and treatment.

    I have received great care by the Philadelphia Veterans Administration Hospital and the Upenn Rheumatology Department (NIH Vasculitis/GPA consortium hospital)

    The progression of events that led up to my definitive diagnosis were: discovery of Alpha1 Antitrypsin deficiency>shortness of breath>pressure in back>Xray>2 masses on right lung>antibiotics>2d Xray>CT Scan>PET Scan>differential diagnosis of lung cancer>lung biopsy>inconclusive>second lung biopsy>review by the Joint Pathology Center>2 masses found to be granulomas>ANCA blood test>positive>DEFINITIVE DIAGNOSIS>referral from pulmonologist to infectious disease>ruled out symptoms masquerading as GPA.>referral to rheumatology.>TREATMENT: Prednisone,Bactrim,Fosamax,Calcium,Vitamin D, Rituxan> Feeling great FINALLY!!!

    I have suffered a lot physically and emotionally over the last couple of months as I am sure you all have. Through it all, my faith in Jehovah Rapha (The Lord that health thee) [Exodus 15:26] has been greatly strengthened.

    Thanks for making this forum available.

    XnCelt (Xn - Christian/Celt)
    also known as Roger

  2. #2
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    Default

    Hi Roger and welcome to the forum.

    I'm glad you have had some wonderful care/treatment and that you are now feeling great

    It appears that we have a few new members and many old ones from Philadelphia.........something in your water maybe
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    winkBack: there may be more but they just haven't found this forum yet.


    Sent from my iPhone using Tapatalk

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    Welcome to the gang x


    Sent from my iPad using Tapatalk

  5. #5
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    A little delayed but welcome, lots of good information on here to help you understand the treatments. And be sure to ask any questions you may have, someone on here can relate and answer them for you.
    Dx'd December 2000

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    Welcome to the forum. I live by Valley Forge and I've been a member for a couple of years and have been more "tuned in lately". I have involvement in my sinuses that traveled to my left optic nerve and into my brain. I had surgery in 6\2013 to remove everything including the left eye. I doctor with Jefferson hospital and Wills eye.
    This is a great place for support and information and a couple of laughs.

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    Welcome! I'm so glad your treatment is working for you.

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    Welcome! My father had A1D (Alpha-1) and I'd never met another person with it until coming here. Looking back, I wonder if he really had A1D or if he had Wegs/GPA, you know? He ended up passing from Brain Cancer mets from the Lung. It's just so strange ... 13 years after he died I am diagnosed with Wegs/GPA and have a high PR-3 which is also indicative of A1D. (Kaiser says they did the blood test and I don't have the same disease as my father - that's good).

    I hope you have a good treatment plan in place with a good team of doctors. It was a mildly bumpy road for me but I love my rheumatologist!!! I am hoping that she can keep me in good health ... once I get this thing back under control.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    Welcome to the informative place you will find about your condition. I took almost the same route as you to get with Wegs except I am neg. ANCA and had to have a lung resection. I'm so glad that your tx's seems to be working for you. All the best to you.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  10. #10
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    Default New Member from Philadephia

    Donna,

    Tell me about your diagnosis…were your first and only symptoms in your sinuses? How did your doctors definitively diagnose GPA? ANCA blood tests and biopsy? Do you see Dr Merkel or Dr Sreih at UPenn Rheumatology? Did your doctors diagnose your GPA early and did they get you on Rituxan right away?


    Sent from my iPad using Tapatalk

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