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Type: Posts; User: Masha

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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...
  4. 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...
  9. 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...
  10. 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. ...
  11. 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...
  14. 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.
  17. Thread: Avacopan

    by Masha
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    Re: Avacopan

    Hey Y’all,
    I am like a dog with a bone regarding avacopan.
    Found an interesting article by looking at Chemo-centryx Motley Fool. My husband found their 3rd Q conference call, too. That was very...
  18. Thread: Avacopan

    by Masha
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    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...
  19. Thread: Avacopan

    by Masha
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    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...
  22. 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...
  23. 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...
  24. 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...
  25. Thread: Medical Cannabis

    by Masha
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    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...
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