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Thread: new menber

  1. #1
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    Default new menber

    i was diagnosed with wg on sept 1 2008. i was so glad that the dr's found out what i had i was in extream pain for three months all my jonts were barley walk i couldn't sleep my ear was sore i had huge uslers in my mouth couldn't eat what a mess i was. when in the hospital and put on meds my body responded qiuckly to the treatment. on oct 16 is was told im in remission. wow im so lucky.my wife is having a real tough time we have been married for 32 years. 3/12 years ago our 22 year old daughter passed away also from a rare blood disese called ttp. the dr's say that there is no connection with the diseases. anyway thanks for the ear and for this site

  2. #2
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    Default

    G'day!!!
    Congratulations on the remission! I've was diagnosed in 2003 and haven't got that far yet

    Is your remission medication-free or do you need to keep up with certain drugs?

    So sorry to hear about your daughter. I don't have kids so I can only imagine what that must be like to go through. While there has certainly been multiple WG cases within families, even then there is no proven relationship between each instance. When someone eventually finds a cause (and there must surely be one somewhere), it'll be a great relief to many.

    Welcome to the forum, glad to have you on board
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  3. #3
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    Default thats a long time

    they have cut my meds in half im still on cyclophosphamide prednisone,septra and didrocal. i go for a follow up next thursday the doc wants me of the cyclophosphamide but not untill the end of nov.. how about you five years what kind of treatment are you on how do you feel?please andrew when you get time i would love to hear your story.

    Quote Originally Posted by andrew View Post
    G'day!!

    !
    Congratulations on the remission! I've was diagnosed in 2003 and haven't got that far yet

    Is your remission medication-free or do you need to keep up with certain drugs?

    So sorry to hear about your daughter. I don't have kids so I can only imagine what that must be like to go through. While there has certainly been multiple WG cases within families, even then there is no proven relationship between each instance. When someone eventually finds a cause (and there must surely be one somewhere), it'll be a great relief to many.

    Welcome to the forum, glad to have you on board

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