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Thread: How many got the Wegners or GPA Dx without a bx?

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    Default How many got the Wegners or GPA Dx without a bx?

    Newly diagnosed late this year and was wondering how many got this Dx without a Bx. Now mine is confined to my eyes and joints where Bx is unlikely. I have a local Richmond MD but I wiggled into Duke later in February.
    Just 6 weeks into low does Methtx and 10 mg of Prednisone. Symptoms have gone away. My MD just calls it arititius and I'm not certain he has a solid plan for me thus the trip to DUKE.

    I think one of the most frustrating things is having to wait so long to be seen. It took me almost 10 weeks to get into a Rheumatologist. If I was having chest pain I'd be seeing a Cardiologist today- there seems to be no sense of urgency among providers and the end result here could be a very bad ending .

    Brad

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    Default 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 was Wegenerís. I asked if they had any other possible dx, and they said no. I asked how they could confirm the dx. They replied either via an open lung bx or if I responded to treatment. I declined the bx and began treatment of 150 mg/day of cytoxan, 60 mg/day of pred, and bactrim DS 3x/week. I began to feel better pretty quickly. I tell others that I was dxed via a process of elimination.

    If youíre feeling better on mtx and pred, thatís good news. If symptoms get worse or return, call your Duke doc. He should be able to direct your PCP to an appropriate treatment plan.
    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: How many got the Wegners or GPA Dx without a bx?

    Quote Originally Posted by Bradhunter View Post
    Newly diagnosed late this year and was wondering how many got this Dx without a Bx. Now mine is confined to my eyes and joints where Bx is unlikely. I have a local Richmond MD but I wiggled into Duke later in February.
    Just 6 weeks into low does Methtx and 10 mg of Prednisone. Symptoms have gone away. My MD just calls it arititius and I'm not certain he has a solid plan for me thus the trip to DUKE.

    I think one of the most frustrating things is having to wait so long to be seen. It took me almost 10 weeks to get into a Rheumatologist. If I was having chest pain I'd be seeing a Cardiologist today- there seems to be no sense of urgency among providers and the end result here could be a very bad ending .

    Brad
    Hi Brad
    i was diagnosed with wegeners disease without a biopsy. I presented with severe vasculitis of nasal passage and sinus and positive anca. All other labs normal. I started on prednisone 60mg for a month then received rituxan Infusion. I had pretty severe hip pain over the summer which became less painful this fall. The vasculitis improved too but flared again late November. Had another 2 doses of rituxan in December. Still on prednisone but hip pain gone and nose and sinus much improved.
    goood luck!

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    Default Re: How many got the Wegners or GPA Dx without a bx?

    Hi Brad,
    I got the wg diagnosis without biopsy. 2 nose biopsies turned out false negative. My dr. Made a case consultation about me and got the diagnosis. But I had the classic symptoms of wg - nose bleedings, inflamation in the lungs, ears and joints involved etc. I have also developped a saddle nose, although only few years after the diagnosis.
    If you have eyes and joints involvement it might be wg or something else. I suggest you to consult with vasculitis expert and also with an expert eye dr. Some eye diseases come with joints' pains. Mtx and pred are used to treat many diseases, not only wg.
    Good luck and please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: How many got the Wegners or GPA Dx without a bx?

    Hi Brad, looking back it seems docs may have insisted I get kidney BX which confirmed DX. Not certain as was in a fog. If so, this delayed treatment which contributed to ongoing nephropathy in my feet ... It is a small thing and I should be and am thankful for where I am today.

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    Default Re: How many got the Wegners or GPA Dx without a bx?

    Kidney biopsy confirmed diagnosis and most of my relapses/flares, but I have also had flares confirmed without a biopsy.
    I'm only guessing, but perhaps a dr who specialises in vasculitis is more comfortable in diagnosing without biopsy as they are used to seeing the "signs".
    Diagnosed April 1995

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    Default Re: How many got the Wegners or GPA Dx without a bx?

    Pred and mtx (low dose) would make you feel better if you had any number of different diseases; not just wegs. So, who dx'ed wegs? I was suspected to have wegs, but it wasn't confirmed until my pituitary gland was resected and sent to Rochester for dx.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    Default Re: How many got the Wegners or GPA Dx without a bx?

    Hey Pete thanks - my corneal specialists found my problem was autoimmune. My current Rheumatologist ( might not be for long) is scratching his head . Good news after 6 weeks of Methrx and prednisone my sed rate and C Reactive protein came down to normal levels. Oddly he upped my Methrx to 30 and put me back on 10 of prednisone. Another visit in 6 weeks with no definite plan - I'm a game plan kind of guy which is what drives me nuts about this fella.
    Brad

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    Default Re: How many got the Wegners or GPA Dx without a bx?

    ENT tested me for GPA and came back negative.
    Admitted to hospital and they tested me for GPA, Negative.
    After cross testing and a lung biospsy I finally tested positive for GPA.

    My doctor says even when I was in the Hospital my ANCA wasnt very high, just barely above standard so wouldnt normally raise flags. We now have t look at other factors becuase ANCA alone isnt enough to conclude I'm having a flare up.

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