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Type: Posts; User: Masha

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  1. Re: Newbie here feels like all they can think about is this diagnosi?

    This may sound very insignificant but I would try to do something that would require me to focus on it, like knitting, crocheting or embroidery. These can all be done while you are in a comfortable...
  2. Thread: Donations

    by Masha
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    383,689

    Re: Donations

    Just sent a few Happy Birthday $. This site means a lot. Thank you, Andrew
  3. Thread: RSV vaccine

    by Masha
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    Re: RSV vaccine

    Pete, Thank you for tipping us off. We got the RSV vaccine yesterday. My husband is still weak kneed. I experienced some nausea. Glad we had the vaccine., getting RSV would be very bad.
  4. Thread: Thoughts

    by Masha
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    Thoughts

    Alysia, have been praying for you and sending good thoughts your way.
  5. Re: Mum recently diagnosed with GPA This is my first post and I would love some advic

    Bindy, sounds like you have a lot to deal with at one time. Your 43 year old rheumatologist may be better trained to deal with autoimmune than others were years ago. It is now on the forefront of...
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    Re: RTX and heart damage

    I also get the Rituxan infusions. Yesterday was my first IVIG infusion, nurse came to my home. First IVIG lasted 4 1/2 hours. Tired last night, nurse advised Tylenol or Advil to prevent...
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    Re: Switching To Rituximab

    Pete described everything perfectly. I drink gallons of water starting a few days ahead and also a lot of water when I am receiving it. Fortunately the bathroom is right outside the room where IV...
  8. Thread: Ivig

    by Masha
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    1,072

    Ivig

    Has anyone on here received IVIG infusions. I will be getting them over the next six months. Please share your experiences.
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    Re: Losing patience / covid

    So sorry you are going through this. Since there is no more Evusheld available for us, I have become a recluse. Wearing N95 masks, no restaurants. My blood tests are showing I have no immune...
  10. Thread: Newly Diagnosed

    by Masha
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    1,733

    Re: Newly Diagnosed

    Alan, we love the charm of Baxter Village. When I was originally diagnosed the information on the internet was terrible. One person on this site said he even made out his will. I started with a...
  11. Thread: Newly Diagnosed

    by Masha
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    1,733

    Re: Newly Diagnosed

    Welcome Alan, guessing you are in Fort Mill or Indianland, my neck of the woods. I am 72, got diagnosed five years ago. I think I gained more information from this site than any research. Heads...
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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...
  14. Thread: Evusheld

    by Masha
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    4,866

    Re: Evusheld

    I am sorry you had that reaction. No, but had no reaction to Evusheld.
  15. 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 friend’s 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...
  18. 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...
  19. 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...
  20. Re: Anyone here receive Evusheld for covid prevention?

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

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

    Where in NC. Is it Charlotte?
  23. 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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