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  1. 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...
  2. 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...
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    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...
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    Re: Coronavirus and GPA

    Masha,

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

    The readers digest version: ...
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    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...
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    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...
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    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...
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    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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    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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    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...
  11. Thread: Avacopan

    by richard052018
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    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"...
  12. Thread: Avacopan

    by richard052018
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    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...
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    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...
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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...
  15. 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...
  16. 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? ...
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    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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    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
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    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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    Re: Statistics

    Masha: I believe its one out of 33,000 in the general public in the US get GPA (3 per 100,000 IS usually what's cited). To give you some perspective: the odds of dying in a car crash are 1 in 103. ...
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    Re: Lung Flare

    My disease presented with joint pain, fatigue, loss of appetite, night sweats, and alveolar hemorrhage revealed via coughing up blood and bronchoscopy and ground glass opacity in the CT (the same...
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    Re: Celebrate how far we have come!

    Congratulations on 10 years Dr. Z. Keep letting us know how you are doing. I hope you have an Oximeter handy: it is so necessary for all of us to monitor our SPO2. I feel so fortunate given this...
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    Re: Coronavirus and GPA

    Alysia: I hope from your last post that the RTX is doing its job. It is understandable that the instability of this world is making you anxious, but if I could give you the slightest bit of advice,...
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    Re: Coronavirus and GPA

    Hey guys: just wanted to give you an update on Rituxan Infusions in the COVID-19 Universe (just completed my infusion today)

    After the recommendation of the incomparable Dr. Villa Forte of the...
  25. Re: 41 Years with Wegeners - Not a Relapse after all - Squamous Cell Carcinoma

    I must say you are quite the inspiration. I hope your family realizes and appreciates how tough you are: tougher than a $2.00 steak (I hear this metaphor is popular in Texas). Many blessings to...
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