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Thread: New old guy on the block

  1. #81
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    Default 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 wait 2 to 3 weeks after for vaccine. So I think Rituxin, wait 3 mo. get vaccine is my best option.
    I got to 7.5 prednisone and could feel my throat and chest problems, went back to 8, took daily Bactrim, then it turned into head cold. Will stay at 8 for a few weeks, then try slow decrease again. For people who have been at 60 or 40 this sounds crazy, but getting down from 10 after 3 years is a challenge.

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  3. #82
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    Default Re: New old guy on the block

    Quote Originally Posted by Masha View Post
    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 wait 2 to 3 weeks after for vaccine. So I think Rituxin, wait 3 mo. get vaccine is my best option.
    I got to 7.5 prednisone and could feel my throat and chest problems, went back to 8, took daily Bactrim, then it turned into head cold. Will stay at 8 for a few weeks, then try slow decrease again. For people who have been at 60 or 40 this sounds crazy, but getting down from 10 after 3 years is a challenge.
    My experience is that tapering the pred meds when you get under 10 mg is a real challenge. It does not seem like a 1/2 mg or 1 should be that big of a change after I dropped by 5 or 10 when I went from 50 to 40 or 40 to 30 but my body often seems to say whoa and complain many times and says slow down or go back up. I am currently at 6 1/3 and hoping to get back to 5 or 6 again some time this year.
    Knowledge is power! Wisdom is using it to make good decisions!

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  5. #83
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    Default Re: New old guy on the block

    Thank you for your story. Iím coming close to one year with GPA. It gives me strength to keep going on. Getting over my first flare-up. Got my first coronavirus shot last week. Glad itís turning spring in the Lake Tahoe area. Start of yard work. Lots of things to do. Need something to do doing this coronavirus stuff. Be safe all.

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  7. #84
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    Default Re: New old guy on the block

    I was diagnosed 11 years ago today. I still feel pretty good. Dealing with Covid has been interesting. I got two doses of Pfizer last February followed a month later with a semiannual dose of 500 mg of rituximab. I got the second rituximab in September. I had a Covid antibody test in early December that detected no antibodies. So, I got the booster shortly thereafter. It looks like the trick is going to be striking a balance between maintaining my GPA remission and also having Covid immunity. I’ll be discussing my options when I see Dr VillaForte in March.

    The disease itself continues to degrade my kidneys. Creatinine is edging up. GFR is going down. Nephrology isn’t overly concerned except that I have excessive post-void urine retention (about 500 ml). The worry is that I’ll become more susceptible to UTIs and further degrade my kidneys. I see urology next week and will more thoroughly discuss how to fix this. I also have BPH and am treating that with tamsulosin and finasteride (with slight success).
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  8. #85
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    Default Re: New old guy on the block

    Have you considered getting a Uro-lift to help with retention?
    Knowledge is power! Wisdom is using it to make good decisions!

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