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Type: Posts; User: Masha

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  1. Replies
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    Re: Daily life considerations and precautions

    My husband and I, ages 72 and 79, are using caution as our go to life. We are retired, no grandchildren, so there is no reason not to be careful when we know we are at risk. Only go out with N95...
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    Eyes, Prednisone Blood Sugar

    We all must make sure we have our eyes checked by a reputable eye doctor who knows our disease. I had to wait to get into see one with a fine reputation. He knew my health and said immediately NO...
  3. Thread: Evusheld

    by Masha
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    Re: Evusheld

    I am sorry you had that reaction. No, but had no reaction to Evusheld.
  4. Re: Some questions my doctor hasn't answered (well a lot of questions LOL)

    Hi Kathy,
    This has been a difficult time for all of us. Try not to think of yourself as fearful, just cautious. I am 72 and my husband is 79. My perspective is probably different than yours. I...
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    Re: Hi I'm Arlene and I'm new here!

    Hi Arlene and Ruby,
    This is just the craziest disease. It seems we all have different symptoms and react to medication differently. My doctors think I walked around with GPA for years, too many...
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    Italian Restaurant Near CC

    My friendís adult daughter was just diagnosed with MS, receiving her treatment at CC. They are from Indiana. I know I read about someone going to a good Italian restaurant near CC, and I would like...
  7. Re: Anyone here receive Evusheld for covid prevention?

    FDA revised Evusheld dosage on 2-24-22. We are now told to get 300, before this date we received 150. Now their revision says to go get another 150. Then you are to count six months from your second...
  8. Re: Anyone here receive Evusheld for covid prevention?

    My rheumatologist had to write a prescription for me to get the shots. I am confident that if she felt there was a risk for me she would not have written it. I am very relieved to have it. There...
  9. Re: Anyone here receive Evusheld for covid prevention?

    Nancy, Thank you. I just got my Evusheld shots today at Oakhurst.
  10. Re: Anyone here receive Evusheld for covid prevention?

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

    Where in NC. Is it Charlotte?
  12. 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...
  16. Thread: Avacopan

    by Masha
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    27,976

    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...
  18. Thread: Third Vaccine

    by Masha
    Replies
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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...
  20. Thread: Third Vaccine

    by Masha
    Replies
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    4,269

    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...
  21. Thread: Avacopan

    by Masha
    Replies
    35
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    27,976

    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...
  22. 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...
  23. 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...
  24. 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...
  25. 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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