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  1. Thread: Avacopan

    by richard052018
    Replies
    18
    Views
    2,570

    Re: Avacopan

    Bummer on the Avacopan front

    Per Dr. Villa Forte (met with her this week), she believes that if Avacopan gets FDA Approval, it will be approved for treatment of active disease to induce...
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    Re: Flare up and Rituximab route questions

    I know it is scary to think that you are having infusion therapy but the clinical trials and a decade of field usage show that this drug works. It worked for me. May 2021 will be 3 years for me. I...
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    685

    Re: Suspected Sneaky Kidney Involvement

    Check with your local grocery chains to see what's possible in terms of curbside. My local grocer, Food Lion, has partnered with InstaCart to use their technology to put its entire store online. If...
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    17
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    685

    Re: Suspected Sneaky Kidney Involvement

    Just my $0.02, but I'd rather deal with COVID than deal with end stage renal disease. I'd be on some prednisone immediately if there was blood in my urine. Use curbside pickup for your groceries,...
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    Re: Possible GPA flareup in the ear

    jmq: just curious, you mention 3 years remission but only 2 years of Rituximab. Am I reading this right? Were you taken off RTX maintenance, and now your ANCA numbers are out of sorts? If you...
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    Re: Dagnosed in two weeks

    This is a wild story, but it leaves out one very, very critical component. How are you doing RIGHT NOW? How are your kidneys (current eGFR or Creatinine)? What is your quality of life? Can you...
  7. Re: UTI and antibiotics after RTX infusion

    I'm supposed to be taking my Bactrim DS religiously (part of the Dr. Villa Forte care plan, glad to hear she doesn't pull you off of it before/after infusion, she doesn't manage my infusions so I...
  8. UTI and antibiotics after RTX infusion

    Had my RTX infusion on last Wednesday. Went well. I got my lab draw before the infusion and got my results on Friday. All good except for a +2 on leukocytes (in urine). That smells like a UTI: I...
  9. Replies
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    30,838

    Re: Coronavirus and GPA

    Does anyone have any concerns WRT the rate of FDA approval of these vaccines? No prior vaccines for any of the coronaviruses. New strains popping up every day. Will the vaccine handle the new...
  10. Replies
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    30,838

    Re: Coronavirus and GPA

    Masha,

    This is the study: https://clinicaltrials.gov/ct2/show/NCT00748644

    The readers digest version: ...
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    230
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    30,838

    Re: Coronavirus and GPA

    The term used by my financial counselor was "I was grandfathered in because I was part of the old system" I was fully ready in my mind to drop down to 500mg.

    Has anyone pursued getting Genotech...
  12. Replies
    230
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    30,838

    Re: Coronavirus and GPA

    Dr. Villa Forte (who I consult with mostly remotely) told me she expected the insurance companies to discontinue allowing 1000mg doses after one of the recent trials showed 500mg every 6 months was...
  13. Replies
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    10,293

    Re: Ear, Nose and Eye involvement.

    Hey,

    If I could pile on to the ocular pressure discussion, I'm using Alphagan P and it has my pressure down in the mid-teens. One drop a day. It is liquid gold (very expensive), but thankfully...
  14. Replies
    9
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    2,701

    Re: Need a referral

    Masha/Dr. Z,

    That awkward moment when you think you are making a strong point and you look up and realized you were responding to an original post from June 2019.
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    2,701

    Re: Need a referral

    While many of us are partial to the Cleveland Clinic, US News and World Report consistently ranks Johns Hopkins as the best hospital in the US for Rheumatology. Dr. Philip Seo is considered probably...
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    3,805

    Re: New Member ~ Phoenix, Az

    45 pound weight loss on Pred is incredible. I did the opposite: I gained 45 pounds. I want to take it off, but obviously not enough to put in the work. Hearing it is possible is enough to push me...
  17. Thread: Avacopan

    by richard052018
    Replies
    6
    Views
    945

    Re: Avacopan

    Masha: Just hoping for the best on this. Any sort of snake oil that will work. The Pred is tearing me up and I'd personally love an alternative.

    Did they mention cost and/or insurance "buy in"...
  18. Thread: Avacopan

    by richard052018
    Replies
    6
    Views
    945

    Re: Avacopan

    Masha,

    I'm sure you saw this. FDA application has moved from status "submitted" to "accepted" on AVACOPAN as a NDA (New Drug Application) by ChemoCentryx. FDA sets PDUFA (drug approval) goal...
  19. Replies
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    2,082

    Re: Lowest dose of Rituxan for Wegener's ?

    The MAINRITSAN study was used to expand FDA approval for using Rituxan for remission maintenance. The dosage involved was 500mg every 6 months (I'm currently getting 1g every 6 months myself). In...
  20. Replies
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    Re: Diagnosed with GPA in Bonn - Germany

    I am sorry to hear about your situation but will remain hopeful that you get the needed treatment and recover as much as possible. You have validated my worst fears of this pandemic situation: when...
  21. Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    I'm with seied on your prednisone usage. It seems a bit excessive. I would think with the trouble you are having you'd be a good candidate for the plasma exchange therapy, bring that up with your...
  22. Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Gary: what was the basis for your GPA diagnosis (ANCA-C, PR3, Biopsy)? Did any of the medications help your lungs? Do you have kidney involvement? What are your inflammation numbers like now? ...
  23. Replies
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    2,020

    Re: An interesting twist...

    Gotta be honest bro I'm floored by your diagnosis. I've been told greater than 95% chance of GPA with positive C-ANCA/PR3, so I never questioned my diagnosis. I had a "negative" Kidney biopsy...
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    632

    Re: Statistics

    In exchange for my life, I'd be more than willing to help Dr. Fauci with his fastball.

    https://www.youtube.com/watch?v=0Rr9XC3hNGg
  25. Replies
    9
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    2,020

    Re: An interesting twist...

    Interesting diagnosis on the Kidney biopsy. Was your PR3 also positive (PR3 is part of the ANCA panel for both Labcorp and Quest) in addition to your ANCA (assuming ANCA-C as opposed to ANCA-P)?
    ...
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