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Thread: Newbie :)

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    Default Newbie :)

    Hello,

    I just recently joined the forum but I've been lurking for the past year & thought I would introduce myself. I was diagnosed with GPA in Dec 2016 after 3 years of symptoms. I was finally diagnosed with subglottis stenosis which then led to the diagnosis of GPA. I've had the surgery for the stenosis twice this year & it appears to be narrowing again. I have an excellent ENT in Toronto who is very familiar with Wegener's patients. He in fact referred me to the rheumatologist that diagnosed me. I'm currently on Imuran, Prednisone & just finished Rituximab infusions one month ago. Since the Rituximab I've had worsening of numbness in my hands & feet & dizziness. Has anyone else experienced this with Rituximab? My rheumatologist says it's not related.
    Any info would be much appreciated.

    Jacqueline

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    Default

    GPA can cause neuropathy or make it worse for those already have it.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default

    Hi Jacqueline, I'm afraid I don't know the answer to your question, but just wanted to ask if you live in Toronto and whether your ENT is at Mount Sinai... I'm in BC but I visit Toronto quite a bit and I saw some of the doctors there for a second opinion. I also have subglittoc stenosis and I thought if I ever required the surgery I might have it there.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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    Hi Lisa,

    I live just outside Toronto & I do go to Mt Sinai for my surgeries & to see my rheumatologist. They have a vasculitis clinic there. My ENT is Dr Eric Monteiro & he's been wonderful & I would highly recommend him. I feel so lucky after reading some of the stories on here.
    How long have you had GPA?

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    I was diagnosed in 2013 but my nose and throat problems started many years before. In 2010 I was diagnosed with rheumatoid arthritis and it's only been since I got subglottic stenosis in 2013 that the doctors started saying wegeners. They had considered it before but not diagnosed it. I'm ANCA negative so was finally diagnosed based on symptoms.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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    I am ANCA negative too. Was having breathing problems for 2-3 years before I finally got an ENT to listen to me & she did a CT of my throat & found the stenosis. I'd also had frequent nose bleeds & scabbing in my nose & a perforated nasal septum. I just had my Rituximab in mid August & was exhausted by it too. I also had swelling in my throat during the first infusion & had the extra doses of Benadryl & steroid.
    I'm enerally very fatigued from the Wegener's all the time & don't get much done. I'm back to work but finding it difficult to work full time hours. It's very frustrating.

  11. #7
    luan22 Guest

    Default Re: Newbie :)

    hello, i am also a new member, i would love to listen to people's stories

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    Default Re: Newbie :)

    Quote Originally Posted by LisaT View Post
    ... I'm ANCA negative so was finally diagnosed based on symptoms.
    I haven't had a positive ANCA since diagnosis in 2012--even when I was in the middle of a SERIOUS sinus flare-up in 2013. It's been negative all along. Just because its an ANCA Associated Vasculitis (AAV) does not mean that a positive ANCA is the only way to determine disease or when a flare-up is happening. I learned the hard way, and I have no lining in my sinuses to thank for it.
    MikeG-2012

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


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