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  1. Thread: Transplant

    by Masha
    Replies
    248
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    26,107

    Re: Transplant

    Is the up and down to be expected?
  2. Replies
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    Re: 1000mg or 2000mg rtx ?

    Alysia,
    Thank you for the clear explanation. Wegs is so confusing. My Duke doctor runs a boatload of tests on me. Probably, if I went back and looked Iíd find it. Sometimes I just have burn out....
  3. Thread: Hurricane Dorian

    by Masha
    Replies
    0
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    52

    Hurricane Dorian

    Prayers for all of you in the track of the hurricane.
  4. Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Hi City by the Bay,
    Welcome. I once lived in Los Gatos ( many years ago). I went to Stanford for treatment of a different medical issue. After I read your post I googled them and a bit of more...
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    Re: 1000mg or 2000mg rtx ?

    Alysia, I googled Iig, and with all the information out there I am just as baffled as before I looked.
    Wish I had more knowledge on this subject. What do you think would happen if you went back to...
  6. Thread: Lena's story

    by Masha
    Replies
    12
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    258

    Re: Lena's story

    Hi Lena,
    Welcome! I don’t know if there is much I can add to what has already been said. Like drz I also use the Sinu Pulse machine. It has an attachment for the mouth, which I find helps the...
  7. Thread: Reply to Lena

    by Masha
    Replies
    1
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    49

    Reply to Lena

    Hi Andrew,
    Is there any way we could respond and welcome Lena.
    Thanks,
    Masha
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    Re: Happy Birthdays Thread

    Anne,
    A belated very happy birthday wish. Sounds like you had a very blue day. Are the blueberries in your area large and sweet?
    Whether we celebrate them or not birthdays are grand, because it...
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    Re: Prednisone Reduction

    Geez-O-Pete! You guys got hit with a double whammy. Stress is hard on GPA, sometimes it just canít be avoided. Moving is brutal, but at least now no worries about maintaining a yard or shoveling...
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    Re: Prednisone Reduction

    Thanks Pete. It has taken me 2 months to get down 1 1/2 mg without a flare. Any faster and I will be back where I started.
    Sorry to hear you are having a flare. Do you know what brought it on? ...
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    Prednisone Reduction

    Pete,
    Am looking for the prednisone taper chart you put in a while back.
    Masha
  12. Thread: My GPA story

    by Masha
    Replies
    7
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    241

    Re: My GPA story

    Welcome Rosie,
    So glad you found us. Keep checking in. It is the best way to stay informed.
    It took me over a year of having been diagnosed to find this site. Only three years ago the things you...
  13. Thread: Transplant

    by Masha
    Replies
    248
    Views
    26,107

    Re: Transplant

    Congratulations on your son’s graduation. That would be a happy outing.
    You are always in my prayers. When I read that things aren’t going too well for you, I just don’t know what to say.
    So I’ll...
  14. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Hi Kim,
    Welcome. Wow, your Wegeners journey has taken you down a long hard road!
    What you have already done for the nasal problems are all the things I would suggest.
    As far as the Rituxan...
  15. Thread: Newly Diagnosed

    by Masha
    Replies
    26
    Views
    980

    Re: Newly Diagnosed

    Donít know why they finally approved it. I am guessing there are questions that qualify you. With Wegeners there are days when some of us just canít move, and at other times it is different. Maybe...
  16. Thread: Newly Diagnosed

    by Masha
    Replies
    26
    Views
    980

    Re: Newly Diagnosed

    Sherry, Just had lunch with friends. Their nephew has an autoimmune disease too. He applied for the disability 3 times. He was rejected the first two, but got it on the third try.
    Masha
  17. Thread: Newly Diagnosed

    by Masha
    Replies
    26
    Views
    980

    Re: Newly Diagnosed

    Sherry, Regarding your long term disability_ If you qualify for long term disability and you have paid into Social Security for 40 quarters, you are qualified to receive the full amount of SS that...
  18. Thread: Newly Diagnosed

    by Masha
    Replies
    26
    Views
    980

    Re: Newly Diagnosed

    Sherry, remission is hard to determine, since there are many blood tests involved. My C-anca has always come in higher than normal. I think the best way to tell remission is how you feel, doesnít...
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    Re: new member with question regarding remission

    Hi tac. I wrote a response to newly diagnosed above. It is meant for you and other new members too.
  20. Thread: Newly Diagnosed

    by Masha
    Replies
    26
    Views
    980

    Re: Newly Diagnosed

    Welcome to all the new members who have recently come on board. This is not a fun disease but this is a great site.
    I will reiterate what others have already said. You need a doctor highly...
  21. Thread: Strict Dieting

    by Masha
    Replies
    50
    Views
    6,267

    Re: Strict Dieting

    I made us root beer floats for Independence Day. Used diet root beer , frozen yogurt, frosted mugs and PAPER straws.
    Also had a yummy watermelon. Best news yet, my wegs mouth could handle the cold...
  22. Thread: odd symptoms?

    by Masha
    Replies
    6
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    610

    Re: odd symptoms?

    How is his blood sugar?
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    Vasculitis Symposium

    Who is going to the Vasculitis Symposium in Minnesota? Who has been to one?
  24. Thread: Went to duke

    by Masha
    Replies
    10
    Views
    532

    Re: Went to duke

    Thanks Keith. Like you, my goal is to be drug free someday. Time will tell. Duke is great! If it wasn’t for meeting you on this site, I might never have thought of it. I am seeing a light in my...
  25. Thread: Went to duke

    by Masha
    Replies
    10
    Views
    532

    Re: Went to duke

    Thanks Alysia. I knew he was a Nazi. The article you gave me helped me understand the timeline. Sadly, the US brought many of their scientists here to pick their brain after WWII. We must never...
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