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  1. Replies
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    Re: just starting meds

    Hi Brad,
    Your fear of this disease is normal. If you had a devil may care attitude then something would really be wrong. The most frightening cases that I have read about were diagnosed and...
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    Re: just starting meds

    Hi Brad,
    Even though we are only a few hours away from Duke, my husband, dogs and I drive up the night before, not knowing what kind of traffic we may run into. My appointment is for the next...
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    Re: Morning Sickness (Not Pregnant)

    Medicine can cause this. Once I took my prednisone without food and spent the entire day vomiting.
  4. Re: Journey to being diagnosed, treated, and already first flare up

    It has been excellent. I see Dr. Nancy Allen. She has been researching, teaching classes and treating Wegeners for thirty years. If I have any questions, she responds through the portal...
  5. Re: Journey to being diagnosed, treated, and already first flare up

    Onirin,
    You sure have had a long miserable journey before being diagnosed. I am glad you found us.
    There are many who can relate to all if not some of your experiences.
    Like Natie, my anca always...
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    Re: hearing loss/baha

    Husband has 40 to 50% hearing loss. He went to Costco and paid 1500 each. If you get the right kind, you pay an extra $200 and you Blue Tooth hearing device for TV. Costco has given him great...
  7. Thread: Meds

    by Masha
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    Re: Meds

    Anne,
    The are NGOs Non Governmental Organizations to fill in the cost not covered. I wish I knew more details to give you. Ask at your doctors billing office about it.
    Masha
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    Re: New, in Palm Springs

    Hi Jan,
    Just two things.
    1) How much experience does your Rheumatologist have with Wegeners patients? Don’t be afraid to ask. If you change docs, even if it means a drive to a specialist, do it...
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    Re: New, in Palm Springs

    Hi Jan,
    We are on supplemental with plan F. It covers everything,
    I cracked up at your description of husbands dress code. Mine wore a three piece suit, tie and starched (dry cleaners not me)...
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    Re: New, in Palm Springs

    Hi Jan,
    Take a deep breath. I know the diagnosis can be frightful. But treatment has come a long way. So far we know there is no cure, but once your docs find the right plan for you, you will...
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    Re: Split decision on diagnosis

    Hi Aaron,
    I have read many times people have a difficult time getting the correct diagnosis with this disease. My best advice to you is to go to a Wegeners specialist. The vasculitis site has a...
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    No Politics No Stress

    I am glad this is a non political forum. I do not, never have discussed my views with anyone but my husband. But now I have Wegeners which serves a positive purpose here. Whenever the subject...
  13. Thread: Your Thoughts

    by Masha
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    Re: Your Thoughts

    Pete, my sedimentation rate is 9. Doc said normal was 0 to 15. My Canca was positive, she said low, results before that 1.4. I never get a negative reading there. All other tests, over a dozen...
  14. Thread: Your Thoughts

    by Masha
    Replies
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    Your Thoughts

    OK, as I have been posting, I have been on a very slow reduction of prednisone. Over the summer I went from 10 to 8. But at 8 my throat, sinus and teeth all went to hell in a hand bag. I had to up...
  15. Re: shankxonline - My path to identify GPA and overcome it

    Hi Lea,
    Welcome to our forum. You will learn a great deal here and find plenty of support.
    Anne is right. If you move this up to New Member, you will get a lot more responses.
    Your question of...
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    Re: pberggren memorial thread

    Oh Sweet Alysia,
    My heart breaks for you. You found love but you didn’t lose it. Phil will always be a part of you. He was right, there is nothing wrong with letting the tears out. Your life...
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    Re: Imuran Side Effects

    Mattieus,
    Sorry you went through all of that. Just glad you made it to hospital and getting back to normal.
    I am learning that drug treatment, just like this disease varies from person to person....
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    Re: Imuran Side Effects

    Hi Mattieus,
    I can not take that drug. I was tested and OKd for it too. Started with one, felt like you described. I increased to two, then contacted my doctor. I should have contacted her...
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    Re: Methotrexate without Prednisone

    I am with Ed on this. I cannot say it better than he has. It is hard for me to imagine a Wegeners specialist would not start her with prednisone. I dont like the drug, BUT it has been a necessary...
  20. Thread: Transplant

    by Masha
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    Re: Transplant

    Is the up and down to be expected?
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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 Id find it. Sometimes I just have burn out....
  22. Thread: Hurricane Dorian

    by Masha
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    Hurricane Dorian

    Prayers for all of you in the track of the hurricane.
  23. 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...
  25. Thread: Lena's story

    by Masha
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    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...
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