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Type: Posts; User: smileyurbs

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  1. Re: I am a new member & fairly newly diagnosed

    Hi Kathy,

    I had similar issues with hearing loss and sinus pain when I was diagnosed. My sinus pain was not a sinus infection it was pain associated with GPA. So if your ENT says you don't have...
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    Rituxan side effects two weeks later

    I have been on Rituxan for almost four years now with treatments ever six months. My last four have been maintenance doses of one infusion. This last time my rhumy had me hold off until i got the...
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    Re: Flare up and Rituximab route questions

    Hi there,
    I have been on Rituximab since I was diagnosed almost 4 years ago. Like most have posted the first one was longer then the rest. My infusion in the beginning is like yours 800mg X4 weeks...
  4. Re: EustachianTube Dysfunction: Balloon Dilation

    I have problems with my Eustachian tube being closed as well and have had 5 tubes put in, in 2 1/2 years. Mine usually last 6 months even thought they should last longer. My ENT as well has...
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    Re: Not a diagnosis I expected

    Hi Jim,
    I was diagnosed about 2 1/2 years ago. Your symptoms where very similar as mine, I was very fortunate my primary care doctor put the pieces of my symptoms together early on and requested a...
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    Sticky: Re: Wegeners Granulomatosis / GPA specialists

    Specialist name: Dr Pamela Freeman
    Location (Country/State/City): US, Orlando, FL
    Area of specialisation (e.g. Rheumy, Immunologist etc): Rheumatologist
  7. Thread: New Memeber

    by smileyurbs
    Replies
    6
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    3,981

    Re: New Memeber

    Hi Don,
    Thank you for your response. I think my Rheumatologist is worried since I continue to get more symptoms with my nerves, not so much that I still have symptoms. My Neurologist says the same...
  8. Thread: New Memeber

    by smileyurbs
    Replies
    6
    Views
    3,981

    New Memeber

    Hi everyone my name is Sandy. This is the first time I am posting my personal story and journey with GPA. Last year in May I started having face pain that I kept attributing to a Sinus Infection,...
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    Re: Kidney Involvement

    Hi Linda,
    I hope everything went okay with the doctor's. I too have had kidney problems, along with permanent damage, since being diagnosed with Wegener's last July and have to watch my protein...
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