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Thread: Mal Brown. Diagnosed 10 years ago but new to the forum

  1. #1
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    Default Mal Brown. Diagnosed 10 years ago but new to the forum

    Hi
    I am Mal Brown a 63 yr old grandfather from Byron Bay Australia. Was diagnosed 10 years ago with GPA and/or Lupus.
    It first went back to one eye and lost a fair bit of vision, has subsided until a year ago and has now gone to my lungs. Had definitive diagnosis of GPA with lung biopsy.
    I had pretty standard treatment I think, high dose steroids, oral chemotherapy and antibiotics.
    After 8 or so months symptoms settled down although increasingly breathless. Found I had had a pulmonary embolism. About 2 months ago had a flare up. The GPA had gone to my eyes and had increasingly damaged my lungs. My rheumatologist put me back on high dose steroids, 2 doses of MabThera Iv infusion, Immuran and a blood thinner.
    I have just learnt about this forum, which I'm so thankful for. I don't know anyone with GPA have felt very isolated and uninformed.
    Mal

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  3. #2
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    Default Re: Mal Brown. Diagnosed 10 years ago but new to the forum

    Welcome to the forum. Everyone's story is a little different, which keeps it interesting. This is a great group, and our members are all over the world. There are some other Aussies here who will probably discover you, and some Aussie support groups and get togethers they will tell you about. In fact, you may or may not know that the founder and chief moderator of this forum, Andrew, is Australian. I can't imagine having GPA in isolation for as long as you have. So for that reason, I'm very glad you found us! I'm sure you will get more responses soon.
    Anne

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

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  5. #3
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    Default Re: Mal Brown. Diagnosed 10 years ago but new to the forum

    Hi Mal, and welcome to a great forum.

    It's 10 years for me also, with an RA, GPA and Lupus combination.
    I live in Melbourne

    I'm sorry that this wegs dog has reared his ugly head again, but I'm sure the Mabthera (Rituxan) will works it's magic shortly.

    As Anne said, there are many Aussies on this forum, and I'm heartbroken to think that you have felt so alone in this journey.

    If you are on facebook at all, we have an Aussie and New Zealand group, with over 500 members. As of last week 118 of those members are from NSW.
    I'm not sure if any are up near Byron, but there must be someone.
    We had our first Vasculitis conference in Brisbane, in August this year, with more planned.

    Don't be a stranger now, ya here. You have already been away for too long
    Last edited by mishb; 10-31-2019 at 09:53 PM.
    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: Mal Brown. Diagnosed 10 years ago but new to the forum

    Hi Mel,
    I was diagnosed in Sydney but have since moved abroad. I am sorry that you have felt alone in this journey but you are not! I have said before this disease is not for the faint of heart. I do hope you start feeling better soon.
    Natty


    Sent from my iPhone using Tapatalk

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