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Type: Posts; User: jeniban

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  1. Having another weggie meet up in Sydney. Saturday...

    Having another weggie meet up in Sydney. Saturday 8 October 2016. Would live to see new faces there.:hug2:
  2. Feel free to come to our Aussie Facebook site....

    Feel free to come to our Aussie Facebook site. Loads of great people.
  3. Sorry that you are struggling with the disease...

    Sorry that you are struggling with the disease again. Are any other markers up?
    I'm saying this as my PR3 is now 45 but no other markers are up. I have recently seen my specialist and he is not too...
  4. I joined an Australian Face Book support group,...

    I joined an Australian Face Book support group, which has been up and running for 12 months now.If you are on facebook please join us.
    It is called Wegeners Granulomatosis (WG/GPA) Australia and New...
  5. Thread: WG and HRT

    by jeniban
    Replies
    4
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    1,198

    My Dr discouraged me from HRT as it does increase...

    My Dr discouraged me from HRT as it does increase the chance of getting some cancers.Together with treatment from cyclosphosamide,(dec 09 til Jan 11) which also increases the risk of some cancers, he...
  6. Thread: G'day!

    by jeniban
    Replies
    9
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    1,760

    welcome Vegemite. So happy you got rutuximab....

    welcome Vegemite. So happy you got rutuximab. Beats the hell out of Cyclophosamide as for side effects. Hope everything improves. As mishb said we have an awsome FB group of us Aussies. We talk about...
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    Welcome Chloey, There is possable 2 more people...

    Welcome Chloey, There is possable 2 more people on this site from perth. I'm from Newcastle NSW.
    The trouble with having auto immune Diseases is the fatugue post exertion. I myself are unable to...
  8. Thread: doctor

    by jeniban
    Replies
    5
    Views
    1,543

    Sorry to hear your health problems. Dropping your...

    Sorry to hear your health problems. Dropping your prednisolone at this stressfull time may not be a good idea. sorry to hear about your mother, I know how hard it is see a parent with dementia and...
  9. Thread: Hot Flashes?

    by jeniban
    Replies
    18
    Views
    3,743

    One of the side effects of some medications for...

    One of the side effects of some medications for WG is early menopause. I have hot flushes all the time now and blood test confirm that i have been through menopause. Also headaches can also occur...
  10. Replies
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    Thanks pwc51 and mishb your hints will save me a...

    Thanks pwc51 and mishb your hints will save me a lot of time searching.:thumbsup:mishb hope you can enjoy your to wimbledon trip. Are you going to see Cliff Richard when he is in Australia this year?
  11. Replies
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    I am also going to Europe. We are going in...

    I am also going to Europe. We are going in June,for 21 wonderfull days, 14 day river cruise and 3 nights in Prague and Paris. This is my once in a life time trip:w00t:(saving for 8 years) So looking...
  12. Thread: Hi from Col 23

    by jeniban
    Replies
    16
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    3,073

    Sorry to hear you have had a bad year. I...

    Sorry to hear you have had a bad year. I understand that take cyclo orally it works better then taking by IV. If you are still not in remission by now, question your Dr about other...
  13. Replies
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    5,730

    It must have been scary for you to have a flare...

    It must have been scary for you to have a flare whilst overseas katwoman. I live in Newcastle and my Wegeners keeps flaring each time I reduce my Meds(Dx Dec 09) I am interested in the Drs name who...
  14. I too got peripherial neuropathy in both feet. It...

    I too got peripherial neuropathy in both feet. It started on top of my Rt foot then progessed within 2 weeks to both feet and legs. Then i developed foot drop in my Rt foot and weakness ++++ in both...
  15. Thread: Wedding Invite

    by jeniban
    Replies
    32
    Views
    6,302

    Lady Agnus Bickie of Singleton:proceed:

    Lady Agnus Bickie of Singleton:proceed:
  16. Thread: A rant...

    by jeniban
    Replies
    100
    Views
    18,578

    :predrage:i hated taking my weekly bone builder...

    :predrage:i hated taking my weekly bone builder Actonel(risedronate sodium) so my Dr Changed it to a monthly dose. A lot less inconvenient.:biggrin1: The Pill i hate the most is pred. The jitters,...
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    Sorry to hear about your flare.I have not heard...

    Sorry to hear about your flare.I have not heard rituximab used much in australia. Dr said, that is my next treatment option. As it is not approved for use in Australia for WG, he said i will need to...
  18. Replies
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    5,717

    i too have had numbness in fingers. Dr said it is...

    i too have had numbness in fingers. Dr said it is peripheral neuropathy. It gets better slowly when WG in under control. but gets worst whenever i start to flare. Also i have neuropathy in both feet...
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