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Thread: Hi From Oz

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    Default Hi From Oz

    I have yet to be diagnosed with GPA however several doctors now suspect after a sinus infection that won't go away (4 months now) with the standard treatment of antibiotics and looking at my nose and sinuses the left side only (right side is ok) looks very inflamed. I have some conductive hearing loss on the left side as well. Given this, my ENT specialist sent me off for blood tests and a chest CT. The blood tests showed nothing remarkable except slightly elevated white blood cells (neutrophils) and a raised CRP. The chest CT showed 4 small (4 to 10mm) nodules on my left upper lobe of my lung. My ANCA's (repeated twice) are negative. All my kidney and liver functionality is fine and have no other signs or symptoms. Ive been put on 25mg of prednisone since however my ENT wants to start weaning me off the pred for some reason!?

    I wanted to hear from people familiar with this disease what their thoughts are on whether it sounds like Weg's or possibly something else? Has anyone else only had it on one side of the body?

    One of the Drs wants to repeat the chest CT to see if the nodules have resolved or not. If they haven't he is looking at possibly getting a biopsy to confirm once and for all.

    I very much look forward in hearing from you all.

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    Mark, hi, I'll be the welcome wagon, since I just came on, looking for new posts. Good thatyou have a doctor already suspecting wegeners, and looking into it. Well not great in all, but you know what I mean. Some docs, think no, its rare so...I don't believe its that rare, just undiagnosed. Canca,can be negative, so means little. I'm also negative. These symptoms sound all to familiar, but no one here can say, for sure as you know. I think its great that you're docs are already on top of things. Some, like me, not so much. Mark, others will chime in here, so hold tight. Mark, please get used to;my typos, as if you plan on staying a while, you're gonna have to! Best of luck, and hope to see you around... Deb.

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    Oh and Mark, if it turns out to be wegeners, you're gonna think you are in oz! Wizard of Oz... Little joke, Mark. Not very funny, but.... Deb.

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    Hi Mark,

    Since I'm not a doctor, I won't speculate on a diagnosis. I suggest you find a doctor who specializes in treating Vasculitis. Some of the other Aussies will be able to give you suggestions. I think it would be good to stay on the prednisone until you're diagnosed. That will keep the inflammation down.

    Keep us informed about your progress. Welcome to the club and good luck.
    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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    Quote Originally Posted by Mark76 View Post
    sounds like Weg's or possibly something else?
    Yes it sounds like Wegener's, and could also be something else. With the lung nodules I would be concerned because they can grow quickly. If it's Wegener's then you need proper treatment for it right away, before it gets seriously out of control. Wegener's can do a vast amount of damage in a very short time so don't delay, get an appointment with a Wegener's specialist. Tell us where you are and someone is likely to have a suggestion for a good doctor.

    If it's Wegener's then you don't want to taper the prednisone. Initial prednisone treatment for Wegener's is usually a much higher dose. At 25 mg it might be preventing severe damage. It is also critical in helping your body repair the damage that has already been done. Tapering prednisone usually starts after improvement of the issues, or when side effects become intolerable.

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    Everything you have mentioned fits within the possibilities of Wg. The gold standard for diagnosis is biopsy. I think your doctors have thoroughly checked the woods for horses and should now test for a zebra.
    (this is from a saying in medicine "When you hear hoofbeats in the forest , think horses , not zebras". It means that it is always best to check for the most obvious causes first before checking for more exotic causes of symptoms)
    Since you have sinus inflammation I would think you would be pretty confident that a biopsy rules Wg in or rules it out. The biopsy is done in the doc office with local aneasthesia and is not any worse than a visit to the dentist.
    Given the symptoms you list and as long as they have lasted I wouldn't taper the prednisone until getting biopsy results. As Birdie mentions things can go worse very quickly if it does happen to be Wg.
    The risk of being on pred a little longer is nothing compared to possible damage from tapering too soon.
    I think biopsy would give valuable information and peace of mind no matter what the diagnosis.
    If you do have Wg you will not be seeing the ENT anymore. You should be sent to a Rheumatologist for treatment. ENTs do not manage WG treatment.

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    Welcome Mark, I hope you do not have WG but it is a good thing you have a Dr that is somewhat suspicious. It took two years or more for Dr to figure out my diagnosis and by that time I had kidney damage. Now I have only about 30-35% function. Go ahead with the lung biopsy to confirm it if necessary so you can start treatment if indeed it is WG. You don't want to delay treatment with this disease.
    Karen; dx'ed April 2014

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    Yes Im currently seeing an Immunologist too. Since reducing even from 25mg to 10 Ive noticed pain return. Is it possible its a rebound effect of pred? Yeah not entirely sure why he wants me to reduce before the repeat scan...I see him next week and if biopsy proves weg he wants to start me on methotrexate...is the prognosis good? I must admit im a little scared especially after reading lots on internet.

    Sent from my SM-G900I using Tapatalk

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    It is possible that the pain is a rebound effect of the prednisone. This is something very hard to differentiate. If you don't have Wg it is very possible that it is rebound. If you do have Wg then it is most certainly not rebound since the Wg has not had primary treatment with another medication. Treatment with prednisone is really not treatment of Wg at all but buys time for treatment to start working. In our Wg world 25mg is really not that big of a dose. I myself would be in no hurry to reduce before getting diagnosis. If you are diagnosed with Wg you will stay at 25mg or higher for some time. 10 mg is not enough to deal with Wg that has not been treated with heavier medication.
    Once treatment is working you can start to reduce the prednisone. I would say the prognosis is great.

    It sounds like you are getting good treatment and are headed in the right direction.
    Reading on the internet in the early stages of diagnosis is a double edge sword that mostly cuts the wrong way in the beginning. What I mean by this is even if you have Wg you will never experience most of the things you read about. The treatment for Wg nowdays makes it a very managable condition. I know because I was diagnosed about 37 years ago before the internet, before lots of docs were educated and before some of the really great treatments that are available right now. Plus there is a very good chance of even better, less toxic treatments in the future.

    I've had the illness for a long time. I'm on methotrexate right now and tolerate it very well. I also get Rituxan infusions every 6 months.

    Oh, and I shouldn't forget to tell a possible newbie that I also had drug free remission for twenty years. Hang in there Mark. Keep us posted. Keep asking questions, of us, and the docs. Knowledge helps tremendously.

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    That is so so comforting to hear. Will kerp you updated. Has anyone started with one side of the body particularly sinus?

    Sent from my SM-G900I using Tapatalk

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