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  1. Replies
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    Re: Hello from another new member

    My pr3 has only fluctuated one time in 6 years, I was trying to go drug free at the time, ask your rheumy how much experience she has had with wegs, a second opinion wont hurt you if you are unsure,...
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    Re: ear issues with Wegener's

    Hi Doris,

    As said above, this disease causes many different issues and problems, I had some ear damage due to wegs, it felt like there was liquid behind my left ear, causing me to loose some...
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    Re: Hello from another new member

    Hi Tricia, and welcome.
    Its never good news when someone else comes down with this disease, but you will find a wealth of knowledge, and some answers from the awesome people who frequent this site,...
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    Re: Imuran (Azathioprine) Users:

    Hi Dennis,

    My feet ache the most, especially both of my big toes, didn't have any pain at all when I was med free, my toes are so bad sometimes, I have to walk with a limp, Its a little strange,...
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    Re: Imuran (Azathioprine) Users:

    Hi David,

    Don't forget, this disease is different with everyone, hopefully you have a lot milder case than me, that would be why your dose is different. I didn't technically have a relapse or...
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    Re: Imuran (Azathioprine) Users:

    Hi David,

    I have had Wegs for 6 plus years, I am quite lucky to have had quite good health,I was only taking 100mg imuran a day for maintenance, I am now on 250mg per day and may go up to 300, to...
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    Re: Imuran (Azathioprine) Users:

    Hi David,
    I have been on imuran (Azathiaphrine) for 5-6 years, my rhuemy and I decided to try and go drug free, I tapered down to zero, and was med free for 9 months, still having a monthly blood...
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    Re: Just diagnosed from Queensland Australia

    It was my ophthalmologist, who got onto it first, and got a blood test to check my ANCA, only a day before my rheumatologist told me she thought she new what it was and scheduled the same test as the...
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    Re: Just diagnosed from Queensland Australia

    Hi Rob, When first diagnosed, I was seeing my GP, an ophthalmologist, a ears nose and throat specialist, a kidney specialist, a thoracic specialist, and my rheumatologist. They all played their part...
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    Re: Just diagnosed from Queensland Australia

    Hey Rob, its a bit of a shock, when you have worked hard all your life, and out of the blue, a spanner gets thrown at you. You are very lucky that you were diagnosed so quick, most people get miss...
  11. Re: Rituxin - C19 and C20 and length of B cell suppresion

    In Australia, if you are diagnosed with wegs, they treat you with Rituxin for most cases, this practice has been around for a year or so , i think it costs around $30 a treatment, and this is...
  12. Re: Rituxin - C19 and C20 and length of B cell suppresion

    I have always had a positive ANCA, and my PR3 reading was 4, anything under 2 was negative, the scale in Australia is a little different that everywhere else, and I cant go on Rituxin untill I flare,...
  13. Re: Rituxin - C19 and C20 and length of B cell suppresion

    It would be easy if everything about this disease was in black and white, but its not unfortunately, I have been medication free for 10 months, luckily for me I have had monthly tests, and noticed...
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    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...
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    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...
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    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...
  17. Thread: Anniversary

    by woz
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    1,962

    Re: Anniversary

    Well done vdub, all the best, enjoy the trekking, hope that red car of yours is getting plenty of use.

    Regards Woz...
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    Re: Aiming for drug free remission...

    I have been on aza for over 4 years, my reumy has got me on a slow taper to see if I can be drug free, every 2 months I am dropping 25mg of aza, I hope to be drug free by February, I have my blood...
  19. Thread: 5 Long Years

    by woz
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    1,190

    Well done Mike, You have done a great job to get...

    Well done Mike, You have done a great job to get to this point.

    Live to dream, Dream to live.......
    Regards Woz...
  20. I was on 100mg for the first 4-5 days in...

    I was on 100mg for the first 4-5 days in hospital, when first diagnosed, then to 80mg for about 4-5 days then down to 60mg.

    Regards Woz
  21. I hope to be able to get onto RTX one day, but...

    I hope to be able to get onto RTX one day, but until then, keep up the great job with the info in this thread.

    Regards Woz.....
  22. Thread: Need advice

    by woz
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    362

    Hi Andrew. I had a little Neuropathy in my...

    Hi Andrew.

    I had a little Neuropathy in my left foot from wegs, about 10 months after first being diagnosed, I noticed sharp pain in my left foot, (also both toes, but not as painful), which...
  23. Thread: lung issues

    by woz
    Replies
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    10,373

    You will have to drive that red car a lot more. ...

    You will have to drive that red car a lot more.


    Regards Woz...
  24. Thread: lung issues

    by woz
    Replies
    190
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    10,373

    Its great to hear, that you are on the mend, not...

    Its great to hear, that you are on the mend, not the best news about your lungs.
    All the best, take care...

    Regards Woz....
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    Well done, remission and weight loss, it doesn't...

    Well done, remission and weight loss, it doesn't get better than that, the painting is a brilliant idea, there are some great doctors out there, you have found a great doctor as well as a great...
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