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Thread: 25 years old, diagnosed with GPA

  1. #11
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    I have an appointment for another opinion in August in Boston...

    I don't distrust my rheumatologist but another opinion never hurts, right?

  2. #12
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    Who are you seeing in Boston? I am going in today for follow up Leukemia but see WG in a month.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    Quote Originally Posted by renidrag View Post
    Who are you seeing in Boston? I am going in today for follow up Leukemia but see WG in a month.
    Dale
    im not positive of the doctors name but it's a Brigham and women's hospital center for chest disease

  4. #14
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    Quote Originally Posted by ohitsacrimebaby View Post
    I have an appointment for another opinion in August in Boston...

    I don't distrust my rheumatologist but another opinion never hurts, right?
    That's ok not to totally trust your wg dr. Always challenge him, asking about all issues...

    FB_IMG_1467299724200.jpg
    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.

  5. #15
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    It is hard to challenge her when I know next to nothing about the disease. She listens to my concerns and works well with me.

  6. #16
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    Hi, I'm a new member. Just got diagnosed with GPA - Aug 1, 2016. A week ago. I'm in NH too. you are not alone. It's crazy and scary at times. I've had so many blood/ urine tests, ct scans, a lung biopsy, and Rituxan infusion this week already. My dr's are at Mass General hosp in Boston. I recommend them! I'll be praying for you. You are not alone.

  7. #17
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    Quote Originally Posted by ohitsacrimebaby View Post
    It is hard to challenge her when I know next to nothing about the disease. She listens to my concerns and works well with me.
    At least she listens to your concerns, that's a big plus. I found that reading this forum regularly gave me a lot of knowledge about the disease, even in the early stages of treatment. That makes it easier to gauge whether a doc is really knowledgeable and tuned in to it, or just learning as they go along, or unresponsive to your concerns. She may be OK, but there are really well known specialists in the Boston area, and the two hospitals I think I've heard mentioned the most are Mass General and U of Mass. I'm on the west coast, so what do I know! But I've been on here long enough to soak up a few things....
    Anne, dx'ed April 2011

  8. #18
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    Hi ohitsacrimebaby,
    I was wondering how you were doing in this crazy heat and humidity in NH today. I just realized your last update on this thread was June. How are things going? Did you have your August Brig and Women's appt yet? Let us know. Thinking of you.
    Gabrielle

  9. #19
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    suppose its time for an update.

    I am now 5 months in. My white blood cells have spiked again to 16. And platelets have maintained 550-620. Constantly sick.

    Ive been increased to 200mg of Imuran. Pending on prednisone for a chest ct next week. Also got into pain management. On gabbapentin (?) It's not helping at all. I see that doctor again next week.

    Feeling kind of like a failure because im not responding to this treatment plan anymore. I went to Boston, Brigham and women's, for a second opinion. They agree it's GPA but not with my treatment plan. I am on Imuran because of fertility. The other drugs, from what i was told, impact that.

  10. #20
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    Sorry Gabrielle! I just saw this. The humidity is killing me. I've pretty much stayed inside where it's cool! I had the appointment on Aug 5th. I'm still waiting to hear back.

    How are you??

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