User Tag List

Likes Likes:  0
Results 1 to 6 of 6

Thread: Hello from Melbourne :)

  1. #1
    Join Date
    Nov 2009
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Hello from Melbourne :)

    Hello everyone. I was diagnosed with Wegners 2 years ago but had sleritis in eyes and joint inflammatory problems for 2 years before that. I was lucky the eye guy I saw put me on Prednisone straight away which I think put me into remission back then without knowing the danger I was in. They did the ANCA test when I 1st got the eye problems but it was negative so they thought I had Rheumatoid Arthritis. 2 years ago I had sinus bloackges, eye problems, blood noses, joint inflammation etc and they redid the ANCA and hey presto - Wegners I am. Have been good for the past 18mths on 30mg methitrixate and even got off the prednisone for a year but just had a flare so back on 15mg of prednisone as well as the methitrixate. Have had AF heart rhythum problems and just started to get tingling and numb toe problems. I am lucky I havent had trackie and nose bridge problems like others and my kidneys are OK. Great to find this forum and hear from other Wegners people. If anyone in Melbourne I would love to meet for a coffee (beer out of question these days unfortunatley with Methitrixate which is a bummer), share experiences etc. Am looking for the Wegners expert in Melb or Aust to get the best treatment moving forward, but looking at other peoples stories looks like my journey hasnt been to tough yet.

  2. #2
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,273
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome Danny,
    So glad you are doing well. Sounds like your on the right track with the right medicines. As you probably know you have to keep on top of this disease and listen to your body. I live in the states, South Carolina. I love coffee. Darn

  3. #3
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Danny,
    Welcome to the group! I'm glad they finally diagnosed you properly. It can take awhile for an ANCA to go (+) and some Weggies never do. Yes, yours sounds like a much milder case than many. No lung and no kidney involvement makes it much easier to stay strong and bounce back from the meds, so you should do well.

    Do your docs know Wegs can affect the heart? A yearly echocardiogram is routine for Weggies. Heart involvement is silent, so you have to stay on top of it.

    I hope Andrew can help you find a good Wegs doc.

  4. #4
    Join Date
    Oct 2009
    Location
    Mid North Coast, Australia
    Posts
    130
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Red face

    Welcome to the group Danny,
    Nice to welcome another aussie to the site! If you're are going to have a coffee anywhere in australia Melbourne is definately the coffee capital, have friends down there and get down there every now again...loved to meet another weggie next time I am down that way.
    kat

  5. #5
    Join Date
    Nov 2009
    Location
    in lyndhurst victoria australia
    Posts
    31
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    hi danny i too am in melbourne if you look at new introductions you will see my storey timbo vic aust and i would love to meet up for a coffee at some stage and talk to not only share experiences but i have an excellent professor at rheaumatology talk soon mate oh and if your ever down this way katwomen would love coffee and a chat too . thanks guys Tim

  6. #6
    Doug Guest

    Default

    Danny- Welcome to the site. Australia is well-represented here, and I see you already have a coffee date and some good advice on a weggie specialist! Way to go! I went six years before I met another weggie.

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •