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Thread: Hi From Oz

  1. #11
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    I've not heard of it being in just one sinus but then even after all of these years I'm amazed at the different ways the illness can manifest. I read of a case once where it presented in a mans prostate.
    I've certainly had it affect one ear or one eye.
    I had one elbow swell up. In the very beginning I had nose bleeds that were on one side or the other. It's a small point to be on one side I think. I think you have some other very good symptoms to evaluate.

    Have you had a chance to check out the Vasculitis Foundation Website? Here is a page on Wg: Vasculitis Foundation » Granulomatosis with Polyangiitis (GPA/Wegener?s)

  2. #12
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    I have very interesting read

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  3. #13
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    Hi Mark and welcome, from another Aussie.

    I hope you don't have wegeners. Fortunately, just because you have these symptoms, doesn't always mean that you have the crappy disease, so that is good news.

    In regards to your question about only being on one side, for me my sinus is totally stuffed (yes pun intended) on the right side, my ear was also death on the right side only, however, my eyes and joints were not too fussed on which side they wanted

    Unfortunately, one of the ways to tell for sure if you have WG, is to have a biopsy of the affected area.
    Your ENT can do a biopsy of your sinuses, however, unless they get the correct piece, it is very common to get a false biopsy, or inconclusive.
    In regards to the pred, I was never put on it, until they did a biopsy to confirm, so you are lucky, however pred alone, does not help clear the infections and the stuffed sinus.

    What part of Oz are you from?

    If you do have WG and if you are on facebook, we have a group of Aussies and Kiwi's with WG.
    You could join us to try and get an overview of the condition, that you may (or hopefully not) have.

    Me2 has given some great information and he is correct - with the proper treatment, WG is a disease that you can live with and hopefully be lucky enough to find remission.

    Below is a link to our fb group.

    Best of luck for your next appointments and I hope you don't have WG, but you do need an answer to why you are feeling so crap.

    https://www.facebook.com/groups/516643745050360/
    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

  4. #14
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    Im in brisbane and yes just not knowing is hardest part. Hopefully ive got good ent and immunologists. I will check out fb page thanks. Yes thats what my immunologist said about biopsy in nose being nonspecific which is why looking at lung. I must admit im a little scared about getting s biopsy there especially ridk of pneomothorax etc

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  5. #15
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    I also meant to ask with treatment how quickly does aigns and symptoms resolve such as sinuses and hearing?

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  6. #16
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    Depending on the treatment of course, but I am in medicated remission, with prednisolone down to only 2mg now. and that too me 5 years.
    For others it can take 6 to 12 month, and others are still on medication (maintenance dose) after 20 years.

    Brisbane is a great place for treatment, and you may find others in the fb group, that go to the same specialists.
    I actually travelled up there in August 2015 and had lunch with about 12 WG patients. It was awesome. We will do that catch up again, this year.

    My hearing resolved after about 6 months, from hearing nothing at all in my right ear, to only having issues with hearing, in a crowded room or where other noises are going on. As for the sinuses, well mine still haven't come good. Are you doing washes and sprays to keep the big crusts/snots away?
    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

  7. #17
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    Sinuses still haven't come good...oh no....sorry to hear! Thats really the main thing causing me the greatest grief. Some nights even on endone the pain especially in sinus and teeth is insane. I can't imagine living with that for rest of my life. Yes routinely wash with saline just bought a new machine called sinupulse which Ive heard good reviews. Also oral steroids. I find, well I did when on at least 20mg pred it kept pain away nicely and didnt need pain relief at all.

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  8. #18
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    I don't have any pain in my sinuses, that stopped about a month after starting treatment, and touch wood, the infection has not come back either but did take a while to go, maybe 6 to 12 months. However, I cannot smell, and I can't breathe through my nose at all mainly due to scar tissue for the inflammation and infections, and possibly also the biopsy. A sinus biopsy, by the way, is very easy and not painful at all.

    The sinupulse machine is terrific.

    I wouldn't be inclined to reduce the pred too quickly while you still have issues going on. This is the little white pill that we all hate, but is a life saver to us.
    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

  9. #19
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    Right that makes more sense. Oh theyre looking at lung biopsy by the way hence greater concern. Yeah to be honest I havent had too many side effects from pred prob because max ive been on for 4 days was 50mg initially apart from a racing resting heart rate

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  10. #20
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    30mg was the highest I have been on, but I was taking other anti inflammatories, for RA, before then.

    50mg is a medium type dose and the hunger pains should start soon

    Yes a lung biopsy would be a concern, but I'm sure many on here can tell you how they survived it. Unfortunately others, have not been so lucky and ended up with complications I hope someone comes along and lets you know what to expect for a lung one.
    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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