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Thread: Hello there.

  1. #1
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    Default Hello there.

    Not sure how to start. First, I am very glad to find this chat all information are very needed and helpful. I'm here for my sister, she got her diagnose 1 year ago after several operations and biopsies. Her symptoms were not typical, disease attack cranial nerves (facial nerve, nerve for talking and eating) and later, lungs were affected too, she also got thrombosis. Now, she is better, facial palsy is still there but her health situation in general is better. So I have question about remission. Her doctors think that she is in clinical remission (from anca and pr3 and also blood results) but for now on they think she must get every year a ct, to be sure that situation is good. What is your experience with health checks after remission? What is normal procedure? Also, do someone have experience with facial palsy? Thank you for your time.

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  3. #2
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    Default Re: Hello there.

    Follow up care varies according to the patient and their health care team. Regular lab work is typical to try catch any serious flares before they cause too much damage. The longer the condition appears stable, the more the interval between check ups can increase. Different specialists need to be involved for different medical issues. Some of my check up are annual and some every three months and the rest in between but it is important to have medical help available for consultation whenever some question or new symptoms appears.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Hello there.

    Welcome Sanja!
    I am in remission and have been for some time now. However I have other health issues as a result of the WG that are checked every two or three months. I haven't had a specific WG related checkup in years but the blood work for the kidney issues I have give an indication of disease activity anyway. So what am I trying to say? I've forgotten I think the same as DRZ. It varies from patient to patient. If the checkups/scans are a year apart for your sister then she's doing great. She should keep an eye on her health though and get checked out if she feels she should - which I'm sure she would anyway.

    Again, welcome aboard!

    Andrew
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Default Re: Hello there.

    Thank you both so much. So we must be careful about her doctors checks. She is first person with this kind of symptoms in our state, so everything is new for health team too, which make me nervous. It's so hard to have open mind about all this stuff, so it's very helpful to read other's experience. Thank you.

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    Default Re: Hello there.

    Welcome to the forum.

    CT once a year sounds ok. But blood tests should be done more often, first every month and later every 3-4 months.

    If I remember correctly we had here someone who had bells palsy. I will see if I can recall what was his name...

    Here - check this profile

    https://www.wegeners-granulomatosis....ceflightAddict

    He was not here for years now but try to read his posts. I hope my memory is correct.
    Last edited by Alysia; 04-22-2021 at 12:16 AM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Hello there.

    Alysia,

    Thank you so much for your welcome and reply.
    It's very needed so I am very appreciative for them.
    I hope all of you are aware how much you help.
    Wishing you the best.

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