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  1. Replies
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    Re: First Major Relapse

    Thank you Natty,

    I do very much appreciate your information. I know no one else here in Ballarat with this disease. There was one man who I actually knew and worked with many years ago but I found...
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    Re: First Major Relapse

    Thank you Drz for your detailed response. Today had an appointment with the doctor to follow up. I’m now getting weekly appointments and blood tests. He put me on Cellcept 500mg twice a day and low...
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    Re: First Major Relapse

    Thank you for your good wishes.
    After such a long battle I now have more specialists involved in my case. The original doctors seem to have stepped into the background. I’m sure they got their...
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    First Major Relapse

    Hi everybody,
    thought I should update my Wegeners journey.
    First diagnosed in 2010 and treated with cyclophosphamide and prednisone for a year and a half until a remission of sorts was induced. ...
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    Hello all. Got an appointment to see my...

    Hello all.
    Got an appointment to see my specialist in 2 days. The one that put me on imuran. I don't think he knows I did the stint in emergency a few weeks ago and was taken off the medication. ...
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    Hi Deb. The psychosis was proven without doubt....

    Hi Deb. The psychosis was proven without doubt. Long story and was very traumatic for me.
    I don't know about the teeth really. I can't remember as it was 4 years ago and so much has happened since....
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    Oh, forgot to say. I asked the dr in emergency if...

    Oh, forgot to say. I asked the dr in emergency if she had come across others with wg. She said she thinks she did once.
    She asked questions on how it affected me. All credit to her, she had my file...
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    Hi Jax, same here. Almost all of the fillings in...

    Hi Jax,
    same here. Almost all of the fillings in my teeth fell out and I lost 3 major teeth through infection. I now can't chew anything on the right side and have only 1 tooth on left upper I can...
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    All valuable input. Thanks. Yesterday morning...

    All valuable input. Thanks.
    Yesterday morning after a very rough night I was feeling so unwell. Before showering I thought I might weigh myself. Three kilos lighter than three days earlier! ...
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    Sorry for taking so long to reply. Thank you all...

    Sorry for taking so long to reply. Thank you all for your valuable input.
    Havent been able to see the dr yet.
    Now on imuran for 2 weeks at only 50mg. I take it with my evening meal at 6 pm....
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    Yeah, got the day off today. I might duck in and...

    Yeah, got the day off today. I might duck in and see the dr.
    It's not constant, lasts only a few hours. Mainly dry reaching.
    The other thing I've noticed is I've gone off food. I love food even...
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    Hi Andrew. Won't see the dr for another few...

    Hi Andrew. Won't see the dr for another few weeks. I did read your body should adjust. I also read if it doesn't go straight to the hospital.
    I haven't vomitted for years. I forgot how awful it...
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    Hi Pete. I think that's a bonus. At least you got...

    Hi Pete. I think that's a bonus. At least you got to work through. Not good getting sick as you retire though.
    I got this in 2010. Just been so hard dealing with it and trying to work.
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    Hello everyone. I've been gone a while. So much...

    Hello everyone. I've been gone a while. So much has happened in the last 4 or 5 months. They have now put me on imuran. 10 days into it so far. Vomitting etc. I feel worse. They say that clears.
    ...
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    Well, so far my contact with the AMA (Australian...

    Well, so far my contact with the AMA (Australian Medical Association), did not fall on deaf ears. I had contact from the medical administrator and discussed my issues involving the lack of medical...
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    Pete, that was 5 years ago now. :biggrin1:

    Pete, that was 5 years ago now. :biggrin1:
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    Hi there all. It took 9 months before I was dx....

    Hi there all. It took 9 months before I was dx. It began like a cold with a constantly runny nose that was within a week accompanied with a 24/7 headache resembling a hang over type headache. At 5...
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    Hi Michelle. After sweating it for almost a week...

    Hi Michelle. After sweating it for almost a week I found out yesterday it's all clear. Don't know what the shadow was but nothing to worry about.
    I contacted the AMA this week and put in a...
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    It's so confusing isn't it? I struggle daily...

    It's so confusing isn't it? I struggle daily with this disease and even more with trying to understand it.
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    I'm not an expert but from what I've read, so...

    I'm not an expert but from what I've read, so called 'limited' only tends to effect upper respiratory which includes the lungs.
    I have not been on any meds for 3 years and I have no kidney...
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    I also have lost taste and smell. Yes it is awful...

    I also have lost taste and smell. Yes it is awful because I love food and the beautiful smells around. I can still taste sweet, sour and salt. I still love cooking and when I eat I go by texture and...
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    Tuesday I have the CT scan. I've only just...

    Tuesday I have the CT scan. I've only just noticed on the referral the dr has ordered the scan because the chest X-ray revealed a shadow on the lungs. That explains the worsening cough. Could be...
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    I am truely sad you are so unwell. I wish I could...

    I am truely sad you are so unwell. I wish I could be there to help you.
    I still work in my own business as a car mechanic. I have a guy that comes in to help when I need it.
    Life seems to be...
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    Thank you all for the feedback. Is it normal to...

    Thank you all for the feedback.
    Is it normal to feel unwell all the time. It comes and goes on a daily basis.
    Do you guys actually feel unwell? Or just when flaring?
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    Hi there all. Sorry for being such a stranger,...

    Hi there all. Sorry for being such a stranger, just been busy.

    After a long waited six months between blood tests and a visit to the specialist I finally got to see the dr again. You won't...
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