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  1. Replies
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    Hi Tasha, I don't know if you are on facebook. ...

    Hi Tasha,
    I don't know if you are on facebook. But there is a very good closed support group named "Wegener's Granulomatosis" on there (...
  2. Thread: nose surgery

    by Yvonnea
    Replies
    13
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    963

    Tasha, I developed saddle nose six years ago...

    Tasha,
    I developed saddle nose six years ago after a bad flare. I started getting restylane fillers to improve my nose cosmetically. I was only just back into remission (on low dose of prednisone)...
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    You did a wonderful job Mike! Great to hear a...

    You did a wonderful job Mike! Great to hear a positive story. You and your wife look very happy. ps. love your dogs...We have a 6 year old Golden. They really are the best therapy.
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    2,348

    I took two infusions of rtx and that kept me in...

    I took two infusions of rtx and that kept me in remission for 4 years. Just took two more as starting to flare again. Have nothing bad to say about the treatment. The infusion takes a long time,...
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    Thank you Pete & Max. Just got the CT results...

    Thank you Pete & Max. Just got the CT results back from sinus/lung/Ear and all clear!!!
    Doc said exactly what you both said. Can't trust the C-ANCA on it's own.
    So I am off on my trip and so...
  6. Replies
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    C-ANCA LEVEL AT 16 - high/low?

    Hi all,

    Went through many past posts on C-Anca levels. And I am left none the wiser.:unsure: I know too that the measurements vary from country to country.

    I always have a positive result. ...
  7. Thread: Good news...

    by Yvonnea
    Replies
    12
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    1,425

    That is great news!!! Wishing you only good...

    That is great news!!! Wishing you only good health from here in.
  8. Haven't got it yet Scotgirl...but definitely...

    Haven't got it yet Scotgirl...but definitely interested in other people's experiences. As it only affects me cosmetically, I have been getting restylane fillers to approve the appearance. If it was...
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    Ears - blockage??

    Hi folks.

    Just querying something.
    I was first diagnosed with WG in ears and lungs 12 years ago.
    Have been in medicated remission for past four years. But over last couple of months, I have...
  10. Good question. I would have said nothing good...

    Good question. I would have said nothing good came of it. But I have made a couple of very good friends, and "met" lovely people on this forum.
    I wasn't diagnosed until I was almost 30. And have...
  11. Thanks for replying....I was getting worried that...

    Thanks for replying....I was getting worried that WG was up to it's old tricks again. Good to know that it is just the new "normal".
  12. Sinus involvement but supposed to be in remission......??

    Hi Folks,

    12 years on, you would think I would be an expert by now, but no, still have queries....
    I am supposed to be in chemical remission for the past four years, on 1,5 mg of prednisone and...
  13. Thread: Depression ??

    by Yvonnea
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    2,111

    Sorry Debra that you are going through such a...

    Sorry Debra that you are going through such a hard time. You are right to get help if you feel this low. I would suggest talking it through with your Doctor first and seeing who he/she recommends. ...
  14. Thread: Miricles

    by Yvonnea
    Replies
    18
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    1,617

    Congratulations! He is beautiful.

    Congratulations! He is beautiful.
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    So sorry to hear your Mother is so unwell. ...

    So sorry to hear your Mother is so unwell. Sending prayers for her and for you and your family.
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    Going out in the Sun

    I have a friend who has recently been diagnosed with sarcoidosis. She was told by her Doctor that she can not go out in the sun because of it, and even on foggy days to wear a high factor sun cream...
  17. Thread: Empathy Cards

    by Yvonnea
    Replies
    3
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    734

    Love them...especially the Lemon one!!!

    Love them...especially the Lemon one!!!
  18. Replies
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    Have the same thing. Luckily no infections. ...

    Have the same thing. Luckily no infections. Ophthalmologist did not recommend surgery, so think it is something that I will have to live with. Have a cataract too, but that is because of the years...
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    Hi Kathie, Great that you are doing so well. ...

    Hi Kathie,
    Great that you are doing so well. Have you tried a change of diet? I switched over to Paleo...cut out gluten etc...three years ago. Not a cure, but helped reduced inflammation and keep...
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    Hi Miranda, I feel your pain. It has been 10...

    Hi Miranda,

    I feel your pain. It has been 10 years since I was diagnosed and treated with cyclo. Luckily still have regular periods, but have not yet managed to have a healthy pregnancy. On a...
  21. My ENT put little plastic tubes in my ears to...

    My ENT put little plastic tubes in my ears to drain the fluid that builds up. This really helped for a while, even stopped the ringing. Didn't go up on the pred. as Rhumie said I was not flaring....
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    To be fair I think people need this site more...

    To be fair I think people need this site more when they are feeling down and unwell. Thats what it is for. Of course people should live the best life they can. I sometimes judge people if I think...
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    Welcome Bek to the site! I am the weggie Anne...

    Welcome Bek to the site! I am the weggie Anne told you about re. restylane to approve nose. If you want any info. just message me. Best of luck with your road to remission.
  24. Thread: Eye tearing

    by Yvonnea
    Replies
    22
    Views
    1,348

    Have the teary eyes too even though in remission....

    Have the teary eyes too even though in remission. They drive me crazy. Was told it could be the pred. Told that I could get operation for the ducts but one advised if it really affected my...
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    Alysia, Beautiful photo of the two of you at the...

    Alysia,
    Beautiful photo of the two of you at the airport. Memories that you will treasure. So sorry that you did not get to spend the rest of your life with your Batman. He was taken way too...
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