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Type: Posts; User: Masha

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  1. Thread: Avacopan

    by Masha
    Replies
    10
    Views
    278

    Re: Avacopan

    In an article Nov 27, 2019 from ANCAVASCULITUS. (I googled it) it refers to limiting steroids and using avacopan in conjunction with Rituxan. I am on information overload.
    My husband just said if...
  2. Thread: Avacopan

    by Masha
    Replies
    10
    Views
    278

    Re: Avacopan

    Am I understanding this correctly? When used with Rituxin there may be no more need for prednisone? I am so excited at the thought of this I could be misinterpreting what I am reading. Some...
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    Re: Happy birthday to me

    Thank you for the birthday wishes. My biggest gift is that I made it this far, 70 years old yippee!
    My wonderful husband will be taking me out to lunch. I did gift myself by replenishing some of...
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    Happy birthday to me

    On Saturday I will be 70 yers old. There were times I never thought I would make it this far. I am sure some of you wonder about your future. We may have some bleak days, but others are bright and...
  5. Re: 41 Years with Wegeners - Not a Relapse after all - Squamous Cell Carcinoma

    Kim,
    I am so sorry to hear everything you have gone through. You must have been just miserable. You did all of us a great service by sharing your journey. If there is any consolation, know that...
  6. Re: A new year, new possibilities! (MikeG's back)

    Hey MikeG,
    Congrats on the terrific weight loss. I too struggle with ‘Body by Prednisone’. When I watch the NutraSystem ads with Marie Osmond she makes it look so easy, but I know it is a...
  7. Re: prescription process- the path from the Dr to the Pharmacy

    You are so right about people fading away. When I was diagnosed my husband reminded me of when his brother was diagnosed with a brain tumor. He was a fun loving, kind and popular person. By the...
  8. Thread: Medical Cannabis

    by Masha
    Replies
    5
    Views
    233

    Re: Medical Cannabis

    Just got some CBD cream. Used it on my back last night. As usual the sinus and jaw on the right side of my face hurt. With whatever residual was left on my hand, I rubbed my nose and cheek. This...
  9. Re: prescription process- the path from the Dr to the Pharmacy

    I really hear you on being too sick to move. I have been lucky enough to have a retired husband who has made in person trips on my behalf. All you can do is keep plugging away. Let’s hope 2020 is...
  10. Re: prescription process- the path from the Dr to the Pharmacy

    I know when we are in pain everything is magnified 100%. While reading your dilemma, the first thing I thought of was “the holidays”. Sad to say but that seems to be the world we live in today. ...
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    Happy Healthy New Year

    It is a pretty good guess that if we are healthy in 2020 we will be happy. So, it is my wish and prayer for all of you to have a healthy New Year.
    Masha:flapper:
  12. Thread: Newly Diagnosed

    by Masha
    Replies
    10
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    419

    Re: Newly Diagnosed

    Hi Donna,
    My doctor was part of the study and research on frequency and amount of Rituxan to be effective .
    They found that large doses less frequently are just as effective as smaller more often. ...
  13. Thread: Recent Diagnosis

    by Masha
    Replies
    9
    Views
    297

    Re: Recent Diagnosis

    Hi Sajo,
    Pete and Don said it well. Find a great doctor and it is treatable.
    It seems like there is no end to where this disease hits. Your case of the groin is the first I heard. My doctor once...
  14. Thread: Donations

    by Masha
    Replies
    114
    Views
    26,495

    Re: Donations

    It’s that time of year to say thanks to those who do so much for us. And Andrew, you give us a great gift with this site. So I wish you and yours a very Merry Christmas, and sending you a small...
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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.
  18. 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...
  19. 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...
  21. Thread: Meds

    by Masha
    Replies
    6
    Views
    346

    Re: Meds

    Anne,
    The are NGO’s 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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