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Type: Posts; User: Masha

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  1. Re: Dr. Appt. - Vaccine did not work (no antibodies)

    Bottom line first. My vaccine did not work. The results of my antibody test just came back- negative. My doctors followed the CC protocol. Waited 6 months from Rituxin for first vaccine, after...
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    Re: Managing symptoms and treatment for a flare

    DRZ, you have probably tried this for the itching. I keep a bottle of pure magnesium oil spray on my night stand. I get that terrible itch on the same spot on my right foot when I am due for an...
  3. Thread: Avacopan

    by Masha
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    Avacopan

    Our hope for a replacement for prednisone is questionable at this point in time. The Advisory board for the FDA had a split decision regarding the third phase of the trials study. It has caused...
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    Re: I am a new member & fairly newly diagnosed

    Kathy, I agree with what Smileyurbs said about changing rheumatologists. Check the Vasculitis site. I learned after wasting time, that I had the right to ask how much experience and how many...
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    Re: Reactions to Covid-19 vaccinations

    DRZ,
    So sorry to hear about your flare. In the back of our minds we all know it could happen to us. And boy, do I feel for you with that increase in prednisone. No matter how careful we are or...
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    Re: Coronavirus and GPA

    What makes me even more nervous is that our Rituxin, which I really need and receive, knocks out our B cells and in order to fight COVID we must have our Bcells. My rheumatologist told me the...
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    Re: Covid vaccins and WG

    First, I must give full disclosure. I followed exactly what you did. Six months out from Rituxin. Got both vaccines. Will get infusion this week, 5 weeks from vaccine. I too thought I reached a...
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    Re: Covid vaccins and WG

    Shanks,
    Thank you so much for responding. I get my Rituxin infusion this week, two months late. I definitely need it, burning legs, bloody crusty nose. My rheumatologist has my prednisone...
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    Re: Covid vaccins and WG

    Boy oh boy, you said it. Glad I am vaccinated. Something is better than nothing. I need my Rituxin, will get infusion next week. My question is, will the infusion (since we know Rituxin destroys...
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    Re: Coronavirus and GPA

    Same with us. Got the second Moderna last week. I just had a sore arm, but my husband had a delayed reaction with fever, chills, aches and pains. I saw my rheumatologist today. I never fully...
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    Re: Coronavirus and GPA

    My neighbor had a strange reaction to her first shot. She was fine, then one week later had enormous swelling and redness from her shoulder to her elbow. She immediately went to her doctor. He...
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    Re: Coronavirus and GPA

    John,
    Sounds exactly like the way we have been living. It is frustrating to watch on the IPad as the shoppers are putting things into your cart. But my husband keeps telling me it is better to be...
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    Re: Coronavirus and GPA

    The good news is we all seem to be on the right time line. My second one is scheduled for Feb 17th, Infusion scheduled for March 18th. I was 6 months out from last infusion when I got 1st vaccine. ...
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    Re: Covid vaccins and WG

    I was back and forth about when to get the vaccine and the timing of my infusion. The grocery store that has a drugstore about a mile from my house got them in. This was kept very quit and we were...
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    Re: Covid vaccins and WG

    NC dropped the age requirement for vaccines from 75 to 65. So many people were trying to get through to MUSC in SC they, including myself were unaware of this change..SC age requirement is 70. ...
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    Re: Covid vaccins and WG

    My doctors will not allow Rituxin infusion until 4 weeks after second vaccine. Roll out in NC is 75 and over, in SC it is 70 and over. In Fl and TN it is 65. In Ohio it starts at 80, then 75, then...
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    Re: New old guy on the block

    Scheduled to get 1000 Rituxin feb 1. I need it, so I will wait another 3 months for vaccine. If I wanted vaccine now, couldnít get appointment until Feb, then another 19 days for 2 nd one. Then...
  18. Thread: Santa

    by Masha
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    Santa

    Wouldnít it be grand if Santa dropped magic powder that knocked out GPA?
    Nah, ainít happening.
    So instead I am sending out, to all of you, my warmest wishes for a safe Christmas and a healthy new...
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    Re: Coronavirus and GPA

    I think your concerns are valid. However, like John, I too am hopeful. I donít think that any of us will be the first to receive it. Doctors, nurses and nursing home patients get it first. We...
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    Re: Coronavirus and GPA

    Yes, Richard, when I went to 1000 mg my Canca and PR3 started coming back negative too. What I would like to know is who are these people who make decisions regarding our medical treatment. How...
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    Re: Coronavirus and GPA

    Pete,
    I have Plan F, a supplement for United Healthcare. I get 1000 mg twice a year. Are they cutting back across the board. The supplement is to pay for what plan B does not pay.

    This should...
  22. Thread: The Four Stages

    by Masha
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    The Four Stages

    THE FOUR STAGES OF LIFE

    1. You believe in Santa
    2. You donít believe in Santa
    3. You are Santa
    4. You look like Santa
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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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