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Type: Posts; User: drz

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    Re: New medication approved for ANCA vasculitis.

    After several more phone calls and discussion the company changed their position and said it does not matter if the drug gets frozen and that it should be OK to take. It just seems strange though...
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    Re: New old guy on the block

    Have you considered getting a Uro-lift to help with retention?
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    Re: New medication approved for ANCA vasculitis. Tavneos avacopan

    I was approved to get the Tavneos (avacopan)drug free for a year but have not been able to start it. The bottle says the med should be stored at 68 to 77 but excursions from 59 to 86 are permitted....
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    Re: Timing of Covid vaccine/boosters and rituximab

    There are new meds to treat Omicron but they will be in short supply. There are efforts increase production of these drugs as they rush to make them available as they will be critical for us elderly...
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    Re: Confirmed Diagnosis

    I also have a sulfa allergy so they give me the half of Bactrim that is not sulfa Trimethoprim and Pentamadine inhalant treatment every 4 weeks. I think the term limited or mild is intended to...
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    Re: Covid vaccins and WG

    I read some studies suggest it might not help much with Omicron version which is now the dominant source of infections. It may not be as deadly or severe but when it results in a massive increase in...
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    Re: New medication approved for ANCA vasculitis.

    Most people only get RTX once or twice a year so it would cost $40000 year. Tavenos for $17000 is probably for a month or $204000 year or best cases if it is 90 day supply, probably unlikely since...
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    Re: New medication approved for ANCA vasculitis.

    Is anyone on this drug? It has been approved for me to try but is very expensive even with my insurance coverage for most of the cost but there apparently is a program to help us retired people on...
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    Re: Can Covid vaccine cause flare up?

    My Moderna vaccinations early this year caused my first serious flare in 10 years. The treatment of high dosage of prednisone and RTX and GPA flare caused a lot of damage to my body. I am reluctant...
  10. Re: AZ antiboy treatment approved for immunocompromised

    I might explore this too since my previous vaccination caused a serious flare with lot of damage to me.
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    Re: Update: First Round of Rituxan tomorrow

    Once you have had such an reaction you learn to try get any vaccinations and infusions in a medical setting where they are equipped to handle such allergic reactions. Glad you were able to complete...
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    Re: It’s always somethingmore

    waiting for results is stressful so hang in there and hope for the best. when is the biopsy?
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    Re: It’s always something…

    Sounds like a stressful experience. Let us know what they learn. Hope it is good news for you.
  14. Thread: Surviving COVID-19

    by drz
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    Re: Surviving COVID-19

    NOVEMBER 10, 2021



    Study investigates factors associated with COVID-19 outcomes in patients with primary systemic vasculitis or polymyalgia rheumatica
  15. Re: Y’all settle in and I’ll make this quick… hopefully

    You are very fortunate if the only damage you got from the GPA is in your septum. Good thing you finally got diagnosed correctly and are getting appropriate treatment.

    I love the reference to our...
  16. Thread: Third Vaccine

    by drz
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    Re: Third Vaccine

    From what I am reading today protection from vaccination starts to wane at 3 months and provides little protection after 6 months, hence the need for boosters.
  17. Thread: Pain in chest wall

    by drz
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    Re: Pain in chest wall

    The chest wall pain is mostly gone now:smile1:
  18. Thread: Flare up Freak out

    by drz
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    Re: Flare up Freak out

    Yes I did the radioactive tracing to detect any blood clot and there was none. My shortness of breath seems worse as I reduce the pred meds but unsure if there is any relationship between the two.
  19. Thread: Autoimmune summit

    by drz
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    Autoimmune summit

    https://whova.com/web/autoi_202104/

    The American Autoimmune Related Diseases Association is proud to present our Inaugural Autoimmune Summit! This virtual two-day event will feature 23...
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    Re: Cyclophosphamide (Cytoxan)

    I took CTX about a year. I started with an IV and then went on oral meds. My pred was tapered down about 50 % during this time depending upon the lab results. It did finally get me into a drug...
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    Re: A great doctor wants our help

    Sorry to hear about your poor care. Any chance you can seek better care elsewhere?
  22. Thread: Pain in chest wall

    by drz
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    Re: Pain in chest wall

    The pain decreased to a mild discomfort but can increase from certain movements. I found heat helps decrease it. It is still tender in that area if I touch it. My physician told me it is very common...
  23. Thread: Pain in chest wall

    by drz
    Replies
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    Pain in chest wall

    The other day I had severe pain and spasms in the left chest wall that immobilized me. A couple days later it is down about 50% It was a new symptoms for me and worst pain I can remember. No idea...
  24. Re: Tinnitus got significantly worse after 1st Rituxan infusion, thoughts?

    I lost my hearing and balance before I ever had RTX so think it was due to GPA and not the RTX treatment. High dosage of pred did not restore it.
  25. Thread: Third Vaccine

    by drz
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    Re: Third Vaccine

    Prednisone weakens your body to increase risk of torn skin and connective tissue. Tearing a tendon becomes a real risk and problem if it happens. I was warned about it when I started my follow up...
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