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  1. Re: Awesome Eye Dr (Boston) - George Papaliodis, MD

    Where are you located? In Vietnam? Have you see an eye doctor?
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    Lol - my drs always ask my birthday too! 😉

    Lol - my drs always ask my birthday too! 😉
  3. Thread: Sick & Tired

    by Gab122
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    I wish I could heal you Alysia. [emoji26]

    I wish I could heal you Alysia. [emoji26]
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    I had lung and ear involvement- dx on 8/1/16. I...

    I had lung and ear involvement- dx on 8/1/16. I am treated in Boston. I started at 60 mg pred and ritux infusions every 4 months. I'm tapered down to 2.5 mg pred now and my disease is in remission...
  5. Thread: 20 year old son

    by Gab122
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    I'm hoping he is discharged by now and home doing...

    I'm hoping he is discharged by now and home doing well! Keep us posted Aneinu !
  6. Thread: 20 year old son

    by Gab122
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    that is so good to hear carriej22 ! Thanjs for...

    that is so good to hear carriej22 !
    Thanjs for sharing!! Something to hope for!
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    Well it looks like this is getting rescheduled....

    Well it looks like this is getting rescheduled. I've been dealing with bronchitis and now added sinus infection. I'll post and update when a new date is chosen for the gathering. :)
  8. Thread: 20 year old son

    by Gab122
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    17,135

    It breaks my heart that young people are dealing...

    It breaks my heart that young people are dealing with this. There are many young people in a Facebook group if he'd like to connect with them. People in their teens and twenties. His age. Maybe...
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    There are 2 others from the Facebook Wegener's...

    There are 2 others from the Facebook Wegener's group that are planning on coming... If anyone else is interested send me a message. :) - Gab
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    2nd Boston Gathering

    ♦️[emoji302]New England Weggies[emoji302]♦️
    Gathering
    The next gathering has been planned! Saturday Feb 18th at the Cheesecake Factory at the Burlington Mall! Burlington...
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    I haven't been on the site much vdub but just...

    I haven't been on the site much vdub but just read what's going on with you. any results yet?
    Sooo glad it's not als!
    Wishing you the best.
    God bless!
    Gab
    PS - don't cheat much on your...
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    Hi sperez7, I'm sorry your and your son are...

    Hi sperez7,
    I'm sorry your and your son are going through this.
    I'm in Boston and don't know Dr's in cali but agree taht the Vasculitis Foundation is a good site to find one.
    Wishing you the...
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    hi Alysia! I think I recall that you may...

    hi Alysia!
    I think I recall that you may have increased pred lately? If so that could affect the fluid in your eyes and in turn affect your eyesite. Did you increase pred lately?
    I hope and...
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    God has blessed me too. :)

    God has blessed me too. :)
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    Where is everyone?

    Hi everyone,
    I do feel like I've known you all so long :) I'm feeling a bit better today emotionally and my hip hurts a little less. So that's good. I worked today - I think that work is a good...
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    We'll have to have you on too Alysia!

    We'll have to have you on too Alysia!
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    Dearest Alysia, We hear you and want to hear...

    Dearest Alysia,
    We hear you and want to hear you. Please always share with us. I'm sorry Phil is not here to support you. [emoji26]

    It is at times a difficult road we are walking. I feel...
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    Hi Nat Beaudette - welcome! I'm relatively...

    Hi Nat Beaudette - welcome! I'm relatively newly dx too. (8/1/16). I started having symptoms about 5/1/16 In my ears (pain, pressure and eventually drainage) I had high anca tests and they used...
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    Annekat I wish you lived closer so you could join...

    Annekat I wish you lived closer so you could join us!
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    JJ, my primary symptom was ear pain and drainage....

    JJ, my primary symptom was ear pain and drainage. I was started on 60 mg prednisone and a week later I had my first ritux infusion. I think my ear pain responded very quickly to the high...
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    Hi JJ - I was just dx 3 months ago and found this...

    Hi JJ - I was just dx 3 months ago and found this site to be very helpful! I'm glad you found us. I agree with everything Pete and Anne said above. (Regarding pred dosage, ritux and bactrim.) be...
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    Great great time meeting some fellow Weggies and...

    Great great time meeting some fellow Weggies and family members!
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    http://uploads.tapatalk-cdn.com/20161120/545b60733...

    http://uploads.tapatalk-cdn.com/20161120/545b607331b7c608be5bb1a067e2f778.jpg
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    http://uploads.tapatalk-cdn.com/20161120/1eb7745fe...

    http://uploads.tapatalk-cdn.com/20161120/1eb7745fe31736c0837383d7e75a35ef.jpghttp://uploads.tapatalk-cdn.com/20161120/4cc4cf16eaea2bf23851d0439ff342f8.jpghttp://uploads.tapatalk-cdn.com/20161120/09058...
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    My mom, Maureen, is joining us. [emoji4]

    My mom, Maureen, is joining us. [emoji4]
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