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Type: Posts; User: Masha

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    Re: send good energy and prayers my way

    Hi Susan Jean,
    Probably, by the time you read this you will be home. Both John and Dirty Don hit it right on when they told you what to expect. You will most likely not sleep the night of infusion...
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    Re: Diagnosed yesterday

    Hi Jen,
    Glad you found us. Yes, initially being exhausted goes with the territory. As time goes on and you get regulated on your medication, you will also learn to pace yourself.
    I’m sorry you...
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    Re: New to Wegener's, new to the forum

    Oh Susan, you have been down a very rough road. Many of us have said that stress has brought on a flare. I was diagnosed after my husband underwent three life threatening surgeries. I would not be...
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    Re: Coronavirus and GPA

    Like most of you, I am staying home. The Carolinas are starting to open. In South, they have opened retail and restaurants for outdoor dining. In North, some businesses have opened. None of these...
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    Re: Coronavirus and GPA

    I have appreciated following each of you on our shared journey. I can relate to all of you (liked the bank robber part).
    My wonderful Duke rheumatologist is retiring. She has given me enough meds...
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    Re: Happy Birthdays Thread

    Lots of Happy Birthdays, me2, Alysia, mishb. This must be the strangest birthday any of you have ever had. Today, April 23rd is my husbands 77th birthday. I told him I would bake him a cake or...
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    Re: Coronavirus and GPA

    You guys are all keeping me sane. It takes a disease like ours to know we must be extra careful. I am such a worrier. Already worrying about doctors appointments in June and July.
    My Duke...
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    Re: Coronavirus and GPA

    WOW! It is 7:25 here and Dr. Birx just mentioned ‘vasculitis ‘. She said Dr. Fauci started the Wegeners study. Did you hear me screaming?
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    Re: Coronavirus and GPA

    So, what do we Weggies do until a vaccine comes out? From the sounds of it that could be a year away, if then. A doctor in Santa Clara, CA said that eventually this virus will hit all of us.
    At...
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    Re: Coronavirus and GPA

    Drz, the medical info you put out is great. My husband printed it out and we are following it. John, Mrs. Maisel is hilarious, so is the song! Marta, you are right on- when someone complained to...
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    Re: Coronavirus and GPA

    Richard, how did it go? Let them laugh, better to be smart than sorry.
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    Re: Coronavirus and GPA

    I am so glad to hear from those of you checking in. If others feel like it let us know how you are doing. We are the folks referred to with compromised immune system. I have a double whammy...
  13. Thread: Good Thoughts

    by Masha
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    Good Thoughts

    During these trying times there are some good things happening to help families and all.
    1. A drive in theater in N.C. has opened the gates for viewing of free old movies. Bring your own food and...
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    Re: Duke visit and Richmond Virginia

    I have been really pleased with Duke too. Did they start you on Bactrim?
    Wegs sinus is brutal. A few things I have learned that help- a Sinu Pulse machine, Flonase, generic or regular Mucinex. I...
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    Re: Coronavirus and GPA

    You are all justified with your concerns. Not only are we aware of our compromised immune system, but we must free up medical personnel from non essential treatments. John, if there is the option...
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    Re: Coronavirus and GPA

    A big shout out to our doctors, nurses and health care workers working tirelessly for all of us. Thanks too to police and firemen keeping us safe. Truck drivers bringing supplies to us and farmers...
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    Re: Coronavirus and GPA

    This thing has taken us all by storm.
    I will start with a little levity. The police in Oregon put out a statement for people to stop calling 911 because they ran out of toilet paper.
    I live in...
  18. Thread: medication

    by Masha
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    Re: medication

    Hi Kelly,
    I am sure your doctor knows best. How do you get sick? Vomiting? My first nurse for Rituxin infusions told me it was very important to eat a full, healthy meal beforehand. I continue...
  19. Thread: Price gouging

    by Masha
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    Price gouging

    This is just terrible. People are trying to take advantage of this corona virus by raising the price of everyday supplies. TP is at a premium, people are fighting over it at the grocery stores. ...
  20. Thread: My story...

    by Masha
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    Re: My story...

    Hi Smashing,
    Welcome. I am glad you found us. I am confident we can give you the support and direction you need. You are in great pain, and I believe the right doctor can help you. Did the...
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    Avacopan Conference Call

    I lost one of my front teeth last night, and spent the day at the dentist. Listened to the conference call when we got home.
    I won’t even attempt to paraphrase what was said. This call was meant...
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    Re: Coronavirus and GPA

    This is a very valid question. Right now I agree with drz to take the same precautions as the flu.
    My husband and I are taking a few proactive steps. We are stocking up on home supplies and non...
  23. Thread: Avacopan

    by Masha
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    Avacopan

    The company that has developed this promising drug for GPA is ChemoCentryx in Mountain View CA. They will be having a conference call that we can listen on February 26 at 3 pm. This will also be...
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    Re: Possible Wagner's but still in limbo

    Solose,
    You have been given the most thorough, experienced advice that all the money in the world could not buy. These people are speaking to you from the heart and sharing all the good, bad and...
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    To all of our Aussie Friends

    What a terrible tragedy and crisis you are going through.
    You are in our daily thoughts and prayers.
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