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Type: Posts; User: Masha

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    Good News Avacopan

    For those interested in stopping the use of prednisone, go to the ChemoCentyrx site and read the November 6 article. The Prescription Drug User Fee Act has set a goal date of July 7, 2021.
    The...
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    Re: Covid vaccins and WG

    The best person to answer this is your doctor. In the past, just receiving the flu shot, I have to complete and sign forms. Then the pharmacist reviews everything. If you donít want to wait until...
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    Re: Covid vaccins and WG

    I had the two shingles vaccines two years ago. The second one knocked my socks off. On any vaccine those of us on Rituxin are to receive either six months after infusion or several weeks before. ...
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    Love Triplet Talk

    I think it is absolutely great to hear about the triplets. Uplifting, positive and beautiful during these trying times.
    I am completely worn out by the news of the day. Reading about those little...
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    Re: Infections from mosquito bites

    Many years ago, when I first moved to Florida I was bitten by a red ant. Now I know these are bad, but my reaction was over the top. I ended up in the hospital and was put on steroids (swore I...
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    Re: Flu shot or not during COVID 19?

    Yep, I have been getting my flu shots for years. My Rituxin was late this year. Flu shots were not available beforehand. Checked with my rheumatologist and she said 2-3 weeks before infusion or 5...
  7. Thread: Fowls Cry Foul

    by Masha
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    Fowls Cry Foul

    During these bizarre times it is difficult to find humor anywhere. But thanks to my British friends I had a good belly laugh.
    The story about the five parrots donated to a park who embarked on a...
  8. Thread: Avacopan

    by Masha
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    Re: Avacopan

    I canít find that price. Probably a good thing, as it may create undue concerns. They must be providing a way for us to take it. We know the number of GPA patients is small, and how many are in a...
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    Re: Diagnosed with GPA in Bonn - Germany

    OK, the itchy feet I can relate to. Sounds small, but bad enough to cause sleeplessness and drive you batty. A while back marta mentioned magnesium helping for leg pain. When my feet got so itchy...
  10. Thread: Avacopan

    by Masha
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    Re: Avacopan

    They said the cost in the conference call before this one. It was so extraordinarily high, my mind threw it away. My husband wouldn’t let me get wrapped up in that because it would be one more...
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    Re: Diagnosed with GPA in Bonn - Germany

    Hi Ilias,
    I am so sorry to hear about your treacherous experience, but very glad that you found this wonderful supportive group. There is not another like it on the internet. I peeked into a few...
  12. Thread: Avacopan

    by Masha
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    Re: Avacopan

    There was a recent conference call with ChemoCentryx, maker of this drug (September 17). Sounds like they are getting their sales force ready for early 2021. I read a few comments about Avacopan on...
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    Re: Lowest dose of Rituxan for Wegener's ?

    I am at 1000 mg every six months. When I am running late on an infusion I really feel it. Now I have the prednisone down to 8 1/2 daily. Will be happy to get to 5. None would be best.
  14. Thread: Happy Birthday

    by Masha
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    Happy Birthday

    Wishing annekat a wonderful, healthy and happy birthday.
    Masha
  15. Thread: Happy Birthday

    by Masha
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    Happy Birthday

    Wishing annekat a wonderful, healthy and happy birthday.
    Masha
  16. Thread: Avacopan

    by Masha
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    Avacopan

    Update. There is a new conference call available at ChemoCentryx. You can access this for about the next week. Approval for Avacopan is now in the hands of the USFDA. The company is now preparing...
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    Re: Coping with stress on current pandemic

    Yep, I am still here. Finally had my Rituxin infusion on Monday. Due to covid, my doctor retiring and establishing with a new doctor, I was two months overdue. I get them every six months, and I...
  18. Thread: Covid-19

    by Masha
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    Re: Covid-19

    Covid-19 hits close to home. I live in a 55+ community with all individual homes. It is a large community, and I am not very active, since GPA, so I donít hear everything. I do know of one man,...
  19. Thread: Statistics

    by Masha
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    Statistics

    Todayís WSJ has an article that states five to ten people out of 1,000 that have covid 19 die.
    This got me thinking about another statistic. One out of how many people get Wegeners. This number...
  20. Thread: Retuxin infusion

    by Masha
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    Re: Retuxin infusion

    No. For the first few my legs would ache a bit. But when I received the most recent one I was just fine. Other than not sleeping the night of infusion because of high dose steroids, I was OK.
    Did...
  21. Thread: Donations

    by Masha
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    Re: Donations

    I love PayPal. Sent mine to Andrew that way this week.
    One time we got taken on a purchase we did not make and they supported us.
    Masha
  22. Thread: Donations

    by Masha
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    Re: Donations

    Andrew,
    Alysia is right. We all owe you a debt of gratitude. Hope you got mine.
    Thanks for everything.
    Masha
  23. Thread: Speak Up Newbies

    by Masha
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    Speak Up Newbies

    Welcome to all of those who have been diagnosed and joined this forum. It took me a year after being diagnosed just to look for a forum like this. Then it took me another few months to get it...
  24. Thread: Lung Flare

    by Masha
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    Re: Lung Flare

    Dorothea,
    I am thinking positive thoughts and sending prayers your way.
    Sounds like you are handling this very well. Comes with experience.
    Is your family allowed to visit you? I know with the...
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    Re: Coronavirus and GPA

    I got to meet my new rheumatologist yesterday. Hooray. I really like her. Sorry to see my Duke doctor retire, but with the virus threat the timing to go locally couldnít have been better. New...
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