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Thread: Help finding Anca for dummies

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    Default Help finding Anca for dummies

    Sometime ago someone posted something called ANCA FOR DUMMIES I think? I want to go back and read it but I can't find it back. I am sorry I am still learning how to navigate all of the information on here! There is so much good stuff, I have to figure out a way of keeping track of what I want to read or find again.
    I hope someone can point me to the thread.
    Thank you!
    Have a great weekend everyone!
    Kami

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    Hey hey
    Is this what you're looking for?

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

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    There is a good discussion on ANCA on the thread 'ANCA - teaching the novice' esp Al's post on December 6th which gives a good explanation of ANCA

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    Thank you both! This is great!
    Have a good day!

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    Is this statement true from the booklet? Anyone considered themselves cured of Wegener's? I thought it was always a chronic disease that is incurable???

    How long will the vasculitis last?
    Your vasculitis may be a short-term illness and cured by treatment. Or, it may
    be a chronic disease that you will have to manage for the rest of your life. If
    your disease is chronic, you may have long periods when it seems to go away.
    This is called “remission”. Because there is always the possibility of it
    returning, you will need to be checked by your doctor on a regular basis.

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    Quote Originally Posted by drz View Post
    Is this statement true from the booklet? Anyone considered themselves cured of Wegener's? I thought it was always a chronic disease that is incurable???

    How long will the vasculitis last?
    Your vasculitis may be a short-term illness and cured by treatment. Or, it may
    be a chronic disease that you will have to manage for the rest of your life. If
    your disease is chronic, you may have long periods when it seems to go away.
    This is called “remission”. Because there is always the possibility of it
    returning, you will need to be checked by your doctor on a regular basis.
    This is one of those wacky statements, drz. "cure", is this case, means "remission", which means that, at present, there is no disease activity. But then it comes back. Sp, no longer remission, no longer "cure". Very goofy. The fact is, the disease represents a way your immune system reacts to events in your life. If those events recur, the disease is, again, in force. The only "cure" would be to re-train your immune system. No one knows how to do this.

    Al

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    The only thing I can think of is maybe drug induced vasculitis could be cured or stopped by stopping the medication that caused it in the first place?

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    It just seemed strange to me they used the word cured at fist and then later in the statement used the word for remission when the disease seemed to go away for long periods of time. Maybe for some people it goes into remission and never comes back before they die from something else first. I would like a 25-30 year remission and would view that as a cure.

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    I would love a 25 year remission as well with no meds to speak of.
    Phil Berggren, dx 2003

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    Quote Originally Posted by drz View Post
    It just seemed strange to me they used the word cured at fist and then later in the statement used the word for remission when the disease seemed to go away for long periods of time. Maybe for some people it goes into remission and never comes back before they die from something else first. I would like a 25-30 year remission and would view that as a cure.
    Many case studies refer to "long-term remission", though I wonder how good this information is, in that this state seems more the exception than the norm--at least for those on this forum and others I have talked to. Maybe "remission" is also in effect whenever Patient X never returns to the original doctor...?

    Al

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