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Type: Posts; User: Pete

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    Re: Coronavirus and GPA

    My wife and I are doing ok. Weíre both prime targets for the virus being in our 70s and being immunocompromised (She has autoimmune hepatitis and takes 75 mg/day of immuran.).

    We go to the grocery...
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    Re: Specialist in or near KY

    annmarie6

    Well, I didnít expect Ohio to pretty much shut down when I last posted on this thread. Iím glad youíre getting in. Hope the delay doesnít cause much grief. OSU canceled/postponed some of...
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    Re: Tinnitus, how can I cope with this symptom?

    Iíve had tinnitus for years and had it before GPA. Itís a constant high-pitched squeal.

    I also had senso-neural hearing loss (thanks to no earplugs while in the army, working in a steel mill, and...
  4. Thread: Bubble Echo

    by Pete
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    Re: Bubble Echo

    I had a heart cath two years ago. They went in through my right wrist. They gave me 5 mcg of fentanyl to relax me. I was coherently awake and watched the monitor while the dye flowed through my...
  5. Thread: Bubble Echo

    by Pete
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    Re: Bubble Echo

    Iíve never had one. Hereís what itís about: https://www.health.harvard.edu/heart-health/what-is-a-bubble-study
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    Re: GPA -> Scleritis and Rituxan anyone?

    For me, getting rtx is almost a non-event. The typical infusion protocol involved a dose of steroid (solumdrol), a dose of benadryl, and tylenol about 30 minutes prior to starting rtx. They start...
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    Re: Specialist in or near KY

    I would expect that you'll be going to Cleveland before April 1. (No foolin')
  8. Thread: My story...

    by Pete
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    Re: My story...

    Hello Smashing!! You've had quite the time of it. I hope you can find a doc with good wegs experience who can get you into a good remission. I'm tagging LisaT and marta who are Canadians. They may be...
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    Re: New Here - Dx question

    Since youíve already been to Mayo (I assume in Rochester), you may want to get an appointment with one the vasculitis docs like Ulrich Specks.
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    Re: Specialist in or near KY

    You can check the Vasculitis Foundationís website. Youíre probably going to find s good specialist at Cleveland Clinic (I see Dr Alexandra Villa Forte there) or Nashville.

    Happy hunting!!
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    Re: I got a 2020 Present!

    I know that blu4runner had a knee replacement last fall, if that helps.
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    Re: Any virtual workout buddies out there?

    Since I got over the ďvirus thatís going aroundĒ, I decided to make some lifestyle changes. Our house is next to one of the community hiking/biking trails, and we live about 1/2 mile from the local...
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    Re: Not a diagnosis I expected

    Youíre in good hands with Dr Villa Forte.

    For me, remission has been pretty much a return to normal. Hope itís the same for you!!
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    Re: Starting Methotrexate

    Iím not sure how quickly mtx induces remission. Itís probably faster than rituximab and slower than cytoxan. Mtx replaced cytoxan in my treatment regimen. My mtx dosage ranged from 20-25 mg/week. I...
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    Re: Not a diagnosis I expected

    Jim the Restless

    Welcome to the club! Iím nine years in following a similar disease onset. Fortunately, I was retired when the disease hit, so I didnít have a job situation to worry about.

    If...
  16. Thread: Avacopan

    by Pete
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    Re: Avacopan

    There are several UK folks on here who see Dr Jayne at Addenbrookes in Cambridge. Geoff, Freakyschizogirl among them.

    Iím very interested in this drug. Hoping itís a lower cost alternative to rtx,...
  17. Thread: Avacopan

    by Pete
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    Re: Avacopan

    Masha

    As I re-read the article, I saw no mention of rtx. Avacopan apparently induces remission all by itself ó no steroids needed. When I next see Dr Villa Forte (probably this fall), Iím going...
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    Re: New old guy on the block

    Nine years in now. I was released from OSU Medical Center nine years ago today. The past year saw my second minor (and third overall) flare. The disease remains well-controlled with an annual dose of...
  19. Re: A new year, new possibilities! (MikeG's back)

    Welcome back, @MikeG-2012!! Hope you get a lifetime of service with the new knee. I also hope the new eating plan gets you to your desired weight and keeps you there.
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    Re: Happy Healthy New Year

    mishb reported that it rained in Melbourne earlier today. I hope it keeps up and moves east. Stay safe!!
  21. Re: prescription process- the path from the Dr to the Pharmacy

    John S

    I must add a hearty Amen!!

    Happy New Year!!!
  22. Thread: Recent Diagnosis

    by Pete
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    Re: Recent Diagnosis

    Sajo

    For me, getting rituximab is pretty much a non-event. Youíll get a big dose of steroids (usually solu medrol), some Benadryl, and some Tylenol before they start the rtx. They start very...
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    Re: Happy Healthy New Year

    Back at you Masha!!!
  24. Re: How many got the Wegners or GPA Dx without a bx?

    Bradhunter

    I had a nasal biopsy that was inconclusive (but suggested wegs) and a bronchoscopy that yielded no definite findings. However, based on my symptoms and other tests, their most likely dx...
  25. Thread: Transplant

    by Pete
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    Re: Transplant

    gilders

    Merry Christmas, Pete!! Iím glad to hear your kidney continues to be effective. Hope that continues into the new year and beyond!!
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