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Type: Posts; User: Masha

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  1. Thread: Avacopan

    by Masha
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    26
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    9,440

    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...
  3. Thread: Third Vaccine

    by Masha
    Replies
    41
    Views
    2,078

    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...
  5. Thread: Third Vaccine

    by Masha
    Replies
    41
    Views
    2,078

    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...
  6. Thread: Avacopan

    by Masha
    Replies
    26
    Views
    9,440

    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...
  7. Thread: T Cells

    by Masha
    Replies
    0
    Views
    207

    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...
  8. 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...
  9. 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...
  10. 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...
  12. Thread: Avacopan

    by Masha
    Replies
    0
    Views
    251

    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...
  15. Replies
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    45,284

    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...
  18. Replies
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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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    45,284

    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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    45,284

    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...
  22. Replies
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    45,284

    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. ...
  23. Replies
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    22,168

    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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