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Type: Posts; User: Masha

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  1. Re: Anyone here receive Evusheld for covid prevention?

    Where do I go. My doctor is with Tryon. Hope they have some left.
  2. Re: Anyone here receive Evusheld for covid prevention?

    Where in NC. Is it Charlotte?
  3. Re: Anyone here receive Evusheld for covid prevention?

    No antibodies here after 2 vaccines and 1 booster. My rheumatologist has me on the list. Since Evusheld is made with monoclonal and that is in short supply it may be a while. I am guessing big...
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    Re: Covid vaccins and WG

    Gilders, I am praying for you. What a way to start the new year.
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    Re: Timing of Covid vaccine/boosters and rituximab

    I get 1000 mg Rituxin 2 x year. Had all vaccines and booster, no antibodies. Evusheld is made to order. May not protect against latest Omicron, but the vaccines aren’t stopping it either. My...
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    Re: Covid vaccins and WG

    John, this is great news for those of us on Rituxin. My rheumatologist notified me yesterday that she is trying to get it for me. We will have so much more freedom. I find myself fearful of so...
  7. Thread: Avacopan

    by Masha
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    13,710

    Re: Avacopan

    Disappointed. All along they said it was to replace steroids. Not what they are saying now. Cost is $150,00 to $200,000 year. It is now being presented as a drug to help patients near organ...
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    Re: A great doctor wants our help

    This is horrible. Your life was put at risk for someone's ego. Is it possible to switch care? Are you in the states? I am so sorry your livelihood has been disrupted. I donít know what kind of...
  9. Thread: Third Vaccine

    by Masha
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    Re: Third Vaccine

    yep, just got third one yesterday. My rheumatologist is ordering antibodies test prior to infusion. I am with you vdub Iíll get the last rites too!
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    Re: Does any one else have days like this?

    Hi Lily,
    These are trying times. Having our disease during covid is wearing many of us down.
    The loss of your grandfather brought back memories of your grandmother. It is normal to mourn. If you...
  11. Thread: Third Vaccine

    by Masha
    Replies
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    2,637

    Third Vaccine

    Who is going in for a third vaccine? My feelings are mixed. If the first two didnít work why should a third. Or could it be that it would work. I messaged my rheumatologist for her feelings on...
  12. Thread: Avacopan

    by Masha
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    13,710

    Re: Avacopan

    A new PDUFA date has been set for on or before October 7th. The reason given for the tie vote in July was that they felt enough time was not given in the last trial.
    I wouldnít doubt if there...
  13. Thread: T Cells

    by Masha
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    T Cells

    Someone on this site wrote about having T cells tested for antibodies. Go to T Cell Direct. I had it done, yes, the vaccine did work on my T cells. This is a very interesting subject for those of...
  14. Re: Dr. Appt. - Vaccine did not work (no antibodies)

    Quick solution. I went to Etsy and bought a cheap cloth mask that says IMMUNE COMPROMISED. You still have to wear a safe mask under it. Bought my husband a pin that says I LOVE A PERSON WITH...
  15. Re: Dr. Appt. - Vaccine did not work (no antibodies)

    Thank you Nancy, I really appreciate the information. After reading your information, I ordered the t test. My doctors do not want their patients to have antibody test. Like I stated previously I...
  16. 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...
  18. 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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