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Thread: I was officially diagnosed today with GPA

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    Default I was officially diagnosed today with GPA

    Had my appointment today with a rheumy..after all the bad reviews I have read I was so nervous to go.

    SHE WAS GREAT and yes she has treated many patients with GPA. I was in her office for over 2 yrs with my brother. After her asking hundreds of questions, full exam and looking back at all my testing etc. Yes, I do have GPA. She is doing more blood work (I will do it tomorrow) and also a CT Scan of the lungs. She said my lungs don't sound good at all. Once she gets all the results back, she will call me and discuss the treatment I will be on etc etc.

    So, that's were I am at right now. It doesn't feel real at all! Denial I think. She also said when I had GBS last June , it was NOT GBS it was GPA and she will be contacting the neuro doctor who treated me. She was very very upset when she saw just how many times I had done to the doctor and no one was listening to me...I really really like this doctor and believe I am in good hands. She has already called me at home to ask more questions and see how I was doing, which made me feel so good.
    AND, having my brother there to hear it all (as he also at times would say it was just anxiety) lol ya right

    Anyways, I just wanted to share that yes I do have GPA and look forward to this group for support and learn as much as I can about the disease.

    Thank you everyone

    Sue

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    I guess we can officially welcome you to "the club" now. Finding a doc who knows wegs and is willing to listen is excellent news. Hope she can find treatments for you that are effective and have minimal side effects.
    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

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    Sue:

    Sounds like you are probably in good hands. The personal touch of calling you at home--nice!

    If your lungs have any issues, you will probably get boatloads of prednisone--at least that is what I had to do. If you do, a great book to read is "Coping with Prednisone". It is written by sisters; one is an interstatial lung disease patient, and the other is a pediatrician. It is a good read and explains all the crazy things that happen when on pred.

    Good that you brought your brother so the two of you can remember the whole visit. It helped me when first diagnosed to write down all of my questions and answers. Kept them in a binder to go back to them later. My Rheumy even wrote answers to my questions on my sheet for me. Sometimes he even wrote something funny/sarcastic in it to see if I actually read his notes later. (-8

    Now that you have a definitive diagnosis, it is time to start getting treated and start getting better!!!

    Keep up the positive vibes, that helps immensely!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Susan, I'm sorry you're joining the Wegeners 'club', as Pete called it, but am vey happy that you at least have some answers and certainty and will be getting treatment now. One question: if she confirmed the diagnosis, why didn't she start you on something right away? She sounds great. AND, she should have known that treatment is urgent and at least started you on prednisone for now while determining what other treatment you will get. Maybe she did and you just didn't include that detail? I hope so! And I hope in your case they will go right to rituximab, which really seems to be the gold standard. Do you have extended health care? Does she have other wegeners patients? I guess that's more than one question, lol.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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    Officially welcome to our wg family, Sue. Sorry that you have to. Glad that you have a great dr. It makes a big difference to have weggies friends and a good dr.
    I guess she didnt start any treatment yet, before doing all the tests, not to mask the results ?
    I LOVE it when docs takes enough time to check us and ask questions and think. I would say that this is one of the best indications for a good dr.
    Thanks for the update. Will be waiting to hear what next. Sending prayers.
    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.

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    Quote Originally Posted by MikeG-2012 View Post

    . If you do, a great book to read is "Coping with Prednisone". It is written by sisters; one is an interstatial lung disease patient, and the other is a pediatrician. It is a good read and explains all the crazy things that happen when on pred.
    Is it this one ?

    https://www.amazon.com/gp/aw/d/B00CK...=UTF8&qid=&sr=
    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.

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    Quote Originally Posted by Alysia View Post
    Yes. That's the one!!
    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

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    Sue, I am glad you are getting started on treatment, so you can get better soon. Welcome to the most informative group out there. Please take care of yourself.
    Jana


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


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    Thank you Pete. The Rheumy has order more blood work and my PR3-ANCA has gotten higher and so many other things out of wack. She said she would call me once all blood work is complete.
    Yes, I am hoping I do well with treatment. I'm still in denial a bit. One min it all feels real and then I tell my self, no the dr's are wrong. I am bouncing back and forward with these emotions ...Still haven't heard yet for CT Scan, hoping it's for today or tomorrow..

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    Hi Jaha

    I am so happy I am here in this group, feeling blessed as my grand daughter would say . I'm ready let's start this treatment

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