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Thread: Confirmed Diagnosis

  1. #1
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    Default Confirmed Diagnosis

    I just got a phone call from Dr. Villa-Forte. She has reviewed my files and the recent CT scan of my lungs and has confirmed the diagnosis of GPA. My local rheumatologist called it "Limited Wegener's". Dr. Villa-Forte prefers the term "mild GPA". To me that's six of one, half a dozen of the other.
    She is prescribing 30 mg Prednisone, infusions of Rituximab and a liquid antibiotic (I'm allergic to the sulfa in Bactrim).
    The next step is to get my local rheumatologist to work with Dr. Villa-Forte. After a year and a half, I hope to start getting better.
    I'm hopping on the train !!!!!!! Next stop......wellness?

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  3. #2
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    Hope your treatment goes well!!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  4. #3
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    John,

    Having a firm diagnosis is a relief in a way, right? At least you know for sure what you are dealing with and how to proceed, and clearly you are getting good care.

    Mild, limited, non-severe... none of those terms are adequate or accurate. My illness is characterized the same way, but it has still been life altering. I guess the distinction is that there is little or no vital organ involvement. I started with 60 mg of pred when I was acutely ill, and had a slow taper down to 0, and that went well. I've not had to go back on it at all, but still take MTX for maintenance. The pred can have some lousy side effects, but will make you feel better.

    Best wishes...

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    Well done John

    I like the direction your train is heading
    - all aboard everyone, the wellness train is on it's way
    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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    Due to the Granuloma Annulare sores on my hands, I have given up ukulele and guitar. I hope to play harmonica this good someday.
    Last edited by John S; 04-18-2017 at 10:41 PM.

  9. #6
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    John, you are in good hands and getting the best treatment. You are going to be be as good as new.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  10. #7
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    John, my son had her as a doctor. She is very good. Keep us posted on your progress please.

    Sent from my SM-G920V using Tapatalk

  11. #8
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    My local rheumatologist is on maternity leave and her replacement wanted to start from ground zero, delaying any treatment for at least 6 weeks. I messaged Dr. Villa-Forte with an idea and she agreed. She has gotten approval from my insurance to start the treatments at the Cleveland Clinic. My wife and I will drive there Sunday and get the first infusion next Monday. I'll spend Monday night there and we'll drive back home on Tuesday if all goes well.

    Dr. Villa-Forte is FANTASTIC.

  12. #9
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    Agreed! Great news. Hope all goes well.Keep us posted please.

    Sent from my SM-G920V using Tapatalk

  13. #10
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    Hard to imagine a doctor proposing delay in treatment, in the face of a confirmed diagnosis. Good job of self advocacy and getting things moving forward. Best wishes.

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