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Thread: New Member from Ohio

  1. #1
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    Default New Member from Ohio

    Hi there, I'm originally from NZ and living in Ohio.
    I'm 50 and was finally diagnosed with GPA in April this year. I think I had smoldering nasal symptoms for about one and a half years. Went to an ENT after an ear infection and got him to treat my constant left sided nasal slugs. Treated for a year with mupuricin rinses that helped but didn't get rid of the crusting completely. I sought out a new ENT because the old one wasn't trying hard enough to figure this out. My new ENT wondered about GPA. After a nasty sinus infection, that put me in the hospital for 4days, then covid 4 weeks later my ENT did another nasal biopsy and more intensive blood tests, which finally showed high ESR, PR3 and C ANCA. Mystery finally solved..
    I had fluid in my left ear, which was fixed with a tube , tracheal involvement, which made breathing difficult and changed my voice. My voice is still a bit off, but breathing is almost back to normal now.
    I've had two RX infusions, and started on 40mg of prednisone and am now on 20mg a day, tapering every 2 weeks. My Rheumy wants me off prednisone by sept.. fingers crossed. I have 2 more RX infusions in sept.. I've been on here a while learning heaps from everyone's experiences. And I know that I'm the one who is going to have to teach my ENT about it as I'm his second vasculitis patient. My rheumy is with Cleveland clinic and is good medically, has experience with GPA and is only 13mins away.
    My blood tests the other day showed a drastic decline in Pr3 numbers..still C ANCA positive and sed rate the same. I have no kidney or lung involvement.
    Now is the fun part figuring out what's weg, what's allergies, and what's a cold or flu..and when to call the doc...luckily with all the stories on here I think I have that figured out. I also had joint pain in my ankles before diagnosis and am enjoying none of that right now. I look forward to chatting and being part of the Weg Family...best wishes to everyone...

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  3. #2
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    Default Re: New Member from Ohio

    Welcome!! Youíre in one of the best cities in the world for vasculitis care. At the Cleveland Clinic, you need to be in the Center for Vasculitis Care and Research (Desk A50 in the Crile Building), if youíre not there already. I saw Dr Alexandra VillaForte there for ten years. Sheís an excellent doctor and a wonderful person. There are other doctors there who really know their stuff as well.

    I was diagnosed at Ohio State , but they had limited vasculitis expertise at the time (2011). They are now developing a vasculitis center within the Pulmonology Department. The doc I see there has good credentials and hasnít changed Dr VillaForteís treatment regimen (500 mg rituximab semiannually and bactrim 3x weekly. I lead a normal life for a 77-year old.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: New Member from Ohio

    Hi Pete, Thank you... and thanks for the info about Cleveland Clinic! It's funny you mentioned Dr Ville Forte, because I had made an appointment to see her (but cancelled) after not being very happy with my Cleveland Clinics Rheumy's bed side manner. But my last visit was a bit better and she has GPA patients so I trust her care, BUT I'm going to research further and find out if I can get my infusions closer to home if I go to DR VF. At the moment it's all about distance. My rheumy is only 10 mins away and the infusions are done in the same building. DR VF is an hour away. I know people travel long distances to see her, so I know I'm very lucky to be only an hour away...plus I know she does virtual appointments.
    I'm glad you have good care and are on a working treatment plan.

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  7. #4
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    Default Re: New Member from Ohio

    Welcome Lucylui.

    Although there was some delay in your diagnosis (like many of us), it sounds like not too much permanent damage has been caused, which is a blessing. Hope you continue to improve and stay in remision.
    Diagnosed April 1995

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