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Thread: A flare might be on its way, in need of help.

  1. #1
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    Default A flare might be on its way, in need of help.

    Hey there fellow weggies.
    I am after a little bit of information. I have had wegs for almost 6 years, started off on cyclo and pred for 3 months, then went to aza and pred for 6 months, then tapered off pred, and have been on aza untill January 2018 where i tapered off, to be drug free for the past 9 months, my Pr3 has always been low between 6 and 9 on the scale of anything over 2 being a positive reading (this may vary in different parts of the world), in the last few months it has slowly risen to around 25, the last test (i get monthly testing) went up to 51, my rheumy is waiting to see what happens, as my inflammation levels are normal, and the rest of my bloodwork is great. I know as long as my inflammation levels are low there is no problem, but the quick rise of my Pr3 is a little disconcerting. Has anyone had an issue like this, or had high Pr3 levels with no issues.

    And does anyone know of any great rheumatologists or wegs specialist in Brisbane/Goldcoast in Australia.
    as my rheumy is retiring.

    Thanks Woz....

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    Default Re: A flare might be on its way, in need of help.

    Hey Woz, sorry to hear that the numbers are creeping up again.
    Good job on becoming medication free.

    Daman Langguth is a clinical immunologist in Brisbane and one of his specialties is Vasculitis.
    He attends all of the seminars in the US and UK and is very much up to date with everything.
    For a Rheumatologist, apparently you can't go past Dr David Careless, in Ipswich

    Best of luck to you, and I hope things settle back down quickly
    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: A flare might be on its way, in need of help.

    Hey Michelle.

    Thanks for the info, I will definitely look up Daman Langguth and try and get in to see him. My rheumy has been great, but she is retiring at xmas, and some who specializes may know a bit more, hope you are traveling well, and life is treating you well.

    Regards Woz...

    Every day you wake up is a good day.........But some days are better than others!!!!!

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    Default Re: A flare might be on its way, in need of help.

    All good here mate.

    As you say, some days are better than others - but I can't complain
    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: A flare might be on its way, in need of help.

    Hi, from my experience and from others', I can say that when the PR3 is rising up - it is an indication for WG activity.
    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: A flare might be on its way, in need of help.

    Thanks Alysia for the advice, I managed to get in to see my rheumy before she retired, we had the same thinking that something was definitely changing, and rather wait until it all turned to you know what!!! we both decided that i go back on aza, and wait and see what happens, a blood test in a couple weeks might tell us a bit more, I am booked in to see another rheumy in February, so i hope to at least control it until then, because the last thing i want to do is go back on pred again.

    Regards Woz...

    Every day you wake up is a good day.........But some days are better than others!!!!!

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