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Type: Posts; User: richard052018

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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...
  5. 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"...
  6. 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...
  7. 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...
  8. 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...
  9. 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...
  10. 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...
  19. 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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    Re: Coronavirus and GPA

    It's terrible that a virus has crippled the world, leading to countless instances of financial ruin, suicide, and sickness/death itself from the virus itself. Without a vaccine this isn't going away...
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    Re: Coronavirus and GPA

    Pete, not to go off topic (although we'd all love to get away from the Wu Flu, even for a second): have you been keeping track of the RTX biosimilars? Apparently Ruxience got FDA Approval for GPA,...
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    Re: COVID 19 and Wegener's - musings

    Don't be so hard on your blabbering: it was quite entertaining (and informative)
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    Re: Coronavirus and GPA

    Masha,

    I dialed it down a little, just goggles and mask. Major Hand Sanitizer once back to the car. Hoping for the best. Take Care
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    Re: Coronavirus and GPA

    Masha,

    I got a call late Sunday night for a mandatory "ALL HANDS" call with my employer Monday AM, so I had to move the lab appointment back to Wednesday. I had to be on the call because I was...
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    Re: Coronavirus and GPA

    Masha: thanks so much for your thoughts. The plan is to go with goggles, mask (hopefully they won't think I'm robbing the joint), gloves, full skin cover, bringing a towel, clorox wipes container...
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