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  1. Thread: Hearing Issues

    by MaxD
    Replies
    3
    Views
    131

    Re: Hearing Issues

    Pete thanks. Yes, hearing aids do have their down sides, but I wonder if they amplify the problem with patulous ears. When my eustachian tubes remain open, my breathing is about all I can hear -...
  2. Thread: Hearing Issues

    by MaxD
    Replies
    3
    Views
    131

    Hearing Issues

    Among the lasting side-effects of GPA, I suffer from tinnitus and a dysfunctional eustachian tube (patulous ear). Sometimes the tube remains mostly closed and I can't hear well until I pinch my nose...
  3. Thread: Evusheld

    by MaxD
    Replies
    16
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    679

    Re: Evusheld

    I was just informed by my rheumatologist's office that Evusheld was approved for emergency use ONCE ONLY. Hopefully this will be extended by the government since the treatment is good for 6 months. ...
  4. Re: Anyone here receive Evusheld for covid prevention?

    I'm scheduled to get evusheld in a week. For updated information on availabile doses check out:
    https://healthdata.gov/Health/COVID-19-Public-Therapeutic-Locator/rxn6-qnx8/data

    You can filter by...
  5. Replies
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    Re: Covid vaccins and WG

    Rtx 500mg in early March. I get one infusion annually. No other medication.
  6. Replies
    104
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    27,740

    Re: Covid vaccins and WG

    Rtx 500mg in early March. I get one infusion annually.
  7. Replies
    104
    Views
    27,740

    Re: Timing of Covid vaccine/boosters and rituximab

    I got my first two vaccines in April. The spike antibody test in late May was negative - no detectable antibodies. I got a booster in November, followed by a spike antibody test in December. Again...
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    30,876

    Rituxan maintenance

    I wonder how long it takes before peripheral B-cells start showing up after a single 1000mg infusion for maintenance therapy. There's quite a bit of variation from person to person, but I have no...
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    Best to have the Wegs expert talk directly with...

    Best to have the Wegs expert talk directly with your local rheumatologist and straighten him/her out. To your point, I have had the Immunoglobulin tests done every 3 months for the past year. One...
  10. Going down from 20 to 10 in one shot could be...

    Going down from 20 to 10 in one shot could be causing problems. Ask your doctor if he could reduce the taper. If I recall correctly, I went from 20 to 15 and then 12.5 before getting to 10. Maybe...
  11. Replies
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    I've had two infusions (1000 mg each) for...

    I've had two infusions (1000 mg each) for maintenance since remission, each about 10 months apart (the docs monitored my B-cells and when they showed up again, I got an infusion). It's been 7 months...
  12. Replies
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    Becky, Johns Hopkins in Baltimore is one of...

    Becky,

    Johns Hopkins in Baltimore is one of the few Vasculitis specialty centers in the US and has a top-notch reputation. If you need, you could consult with them and/or have your local docs...
  13. Gab: The numbers likely refer to the volume and...

    Gab: The numbers likely refer to the volume and page numbers and year of publication in the two journals.

    Don't worry about all the CD markers - the only ones relevant to us are CD19 and 20.
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    Gab: I generally ignore these forms coming from...

    Gab: I generally ignore these forms coming from the insurance company. The docs send in the request and get the approval - if anything is amiss the docs office will take care of it. Rather than...
  15. That's right. Check out: ...

    That's right. Check out: https://en.wikipedia.org/wiki/Cluster_of_differentiation
  16. Gab, Prednisone (high-dose and/or long-term)...

    Gab,

    Prednisone (high-dose and/or long-term) is immunosuppressive, inhibiting the actions of both B- and T-cells. While on prednisone one has to be careful about viral, bacterial and fungal...
  17. Thread: Nyc

    by MaxD
    Replies
    8
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    8,961

    Susan: I live in NJ and see my docs in Manhattan...

    Susan: I live in NJ and see my docs in Manhattan every few months. I expect to see them in Oct and Nov. If meeting a fellow GPA traveler will help allay concerns, send me a PM. I can try to...
  18. Gab: My doctors monitor my immunoglobulin levels...

    Gab: My doctors monitor my immunoglobulin levels (IgG, IgA, IgM) every three months - so far my levels have been around the low side of normal so they are not concerned. But I'm not currently on...
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    Another small personal milestone this summer -...

    Another small personal milestone this summer - hiked up Wheeler Peak in New Mexico last week with my son. It was exhausting of course, but compared to last year, I wasn't as stiff or tired the next...
  20. As Dr Spiera reminds me every time I see him,...

    As Dr Spiera reminds me every time I see him, maintenance medication with RTX is an art, not yet a science. There have been studies showing its effectiveness under a once-every-6 month regimen. In...
  21. I had my first round of 4 infusions in May 2014,...

    I had my first round of 4 infusions in May 2014, and the peripheral B-cells (CD19, 20) showed up at 1% in February 2015. After one booster infusion in March 2015, B-cells were at 0 until late...
  22. Thread: Yoga and WG

    by MaxD
    Replies
    3
    Views
    1,171

    Hi Alicia, I have been practicing Yoga for the...

    Hi Alicia,

    I have been practicing Yoga for the last 10+ years. I stopped practicing when my ear infections started in 2013, resumed several months later when I was put on prednisone - and stopped...
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    You should definitely check with your doctors...

    You should definitely check with your doctors before starting anything strenuous, especially while you're on prednisone taper, and with your kidney involvement. I recall my rheumatologist not...
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    Hege, Sorry to welcome you to this club - but you...

    Hege, Sorry to welcome you to this club - but you will find support and hopefully draw emotional strength from this forum. Your symptoms prior to diagnosis were all too familiar (minus the kidney...
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    You need to get back on prednisone asap. When I...

    You need to get back on prednisone asap. When I was diagnosed, I had 75mg daily for a month, reduced to 60mg after the first infusion and by 10 with each of the next 3. The taper continued for...
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