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Thread: Just came back from sinus biopsy

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    Default Just came back from sinus biopsy

    Hi all,

    My blood tests haven't come back yet, but my creatine levels are normal. My doctor allowed me to start prednisone because my tongue and eyes are becoming enflamed, but I don't know if he'll let me stay on it. He wants a proper diagnosis before treatment but I'm really afraid that something very bad is going to happen if I have to sit around untreated for who knows how long. The pain meds I was prescribed don't even help anymore and it seems like every day a different body part becomes inflamed with pain.

    I am scheduled for a lung biopsy but I'm praying I won't need it. I couldn't sleep last night because the inflammation in my lung/shoulder hurt so badly. Either way I'm ready to do whatever needs to be done.

    The sinus biopsy was unnerving but not painful. I'm just really nauseous and tired and in a lot of pain right now.

    Thank you all for being so supportive and encouraging, I love you all. Going to get through this and be stronger.

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    Default Re: Just came back from sinus biopsy

    Hang in there Howard. Pulling for you during this awful time.


    Sent from my iPhone using Tapatalk

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    Default Re: Just came back from sinus biopsy

    Howard, sounds like you are going through what I did at the beginning, a nasal biopsy, which in my case was conclusive for WG, so I didn't need a lung biopsy. I had a CT scan of my lungs, which showed numerous scattered cavitary lesions, mostly small ones, which are pretty well healed up now, after 6 years, and my WG symptoms have abated greatly. I am still on treatment, pending an appointment with a new pulmonologist, since my old one has retired. My rheumatologist wants to make sure my lungs are OK before considering tapering my immunosuppressant, MTX, though I am trying to taper prednisone beyond 7.5 mg per day. We are all a little different in our ability to get off these drugs. I had a pretty symptom-free summer but now with the cooler, damper weather, I am starting to cough again, which always seems to happen. Like you, my creatinine levels have always been normal, for which I am thankful. I'm sorry you had to join our club, if you indeed have WG/GPA, but you have come to the best place to talk about it and not feel alone. I wish you all the luck in the world in dealing with it and coming out OK on the other end, as many of us have.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default Re: Just came back from sinus biopsy

    Howard, you are probably aware of this, but a nasal biopsy is often not diagnostic, i.e. a negative result is not uncommon at all even when all other indicators are showing that you have GPA. Your labs may tell the story, but negative C-ANCA etc does not not necessarily rule out GPA either. In my case the blood work and clinical signs were pretty definitive, so diagnosis was not as long an ordeal as it is for many. Sorry you are having to go through this. Best wishes.

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    Default Re: Just came back from sinus biopsy

    Tom is absolutely right -- a negative ANCA or biopsy doesn't really mean much. I have never had a positive ANCA and CRP has always been normal or explained, but there is little question I have wegs.

    I think most of us deal with pain to some degree on a daily basis and it moves around. Sometimes shoulders, then hands, then legs, etc. Sometimes your entire body just aches like you have the flu. I always described my pain as feeling like the first day after the first day of football practice where every muscle ached. You don't ever get used to it, but you learn to deal with it. Some days are rough.
    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: Just came back from sinus biopsy

    Hang in there, howard. You are on the way to feel better.
    When I have pains I take paracetamol. Thats what we have here. Is there any similar, not risky, pain med you can take ? Just to be able to sleep.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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    Default Re: Just came back from sinus biopsy

    Hi all,

    The sinus biopsy came back suggestive.

    I had a 10/10 flare up with my eyes last night. They felt like they were being burned out of my skull.

    I'm currently inpatient at Upstate Syracuse. I've met with their best rheumatologist. He wants to rule out fungal and cancer, but he has basically said if it isn't either of those then it's GPA. He just doesn't want to rush to diagnose me incorrectly.

    It was kind of funny having them poke me and pinch me, pull me, have me push them around, and I'm flushed, running out of breath and sweating like I dropped out of fat camp. Have to have a sense of humor.

    All I feel is relief and gratitude. This isn't what anybody wants but it is relieving to know that im close to being on the path to treatment.

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    Default Re: Just came back from sinus biopsy

    I'm glad you went to the hospital Howard.

    Don't worry about the cancer and fungal tests, it's what they always check, and I think I was also tested for TB and AIDS jut to rule everything out.
    It sounds daunting, but they have to be sure.

    Gosh, burning vampire eyes, I can feel your pain. Some pred drops should help with those.

    Treatment is not fair away now - hang in there
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Default Re: Just came back from sinus biopsy

    Howard, I'm glad your sinus biopsy showed a helpful result and it sounds like that will spare you the ordeal of a lung biopsy. When I was in the hospital overnight for tests, there was pain and swelling in and around my eyes, not as bad as yours, but as soon as I was dx'd and began treatment, that symptom disappeared like magic. I hope the same will be true for you. Best wishes.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default Re: Just came back from sinus biopsy

    Thanks for saying “treatment is not fair away now “. That is the best sentence we have heard since all of this started. It is really comforting. Thank god this forum exists!!!

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