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Thread: Me too - New GPA diagnosis. High Anca titer

  1. #101
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    Quote Originally Posted by Gab122 View Post
    THanks Drz! Do you know... Do people ever test negative for c-ANCA after treatment? Or is it generally just a lower score?
    My ANCA scores slowly decreased to the normal range after treatment. And they increased some when my residual symptoms increased and then went back down to normal range as residual symptoms faded some.
    Knowledge is power! Wisdom is using it to make good decisions!

  2. #102
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    Wow! Glad you got some encouragement! That's a lot to take in. So much information! The doctor gauntlet is something we must become familiar with unfortunately. I see 3 more next week as well. Then I hope to return to work. So happy you're feeling better.

  3. #103
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    Quote Originally Posted by Gab122 View Post
    THanks Drz! Do you know... Do people ever test negative for c-ANCA after treatment? Or is it generally just a lower score?
    While in remission my C anca is negative and so is the PR3. You are doing great, Thanks God ♡
    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.

  4. #104
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    Just got My ANCA score- it's 537. About half of what it was August 1. (1178) Negative ANCA would be under 20 I think. But I understand that research indicates that the anca score doesn't necessarily correlate with disease activity. So it's not necessarily bad news I guess, right?. Especially considering my inflammation blood tests (sed rate and c-rp) were so much improved. My sed rate is 8 - down from 85. And My c-rp is 6 - down from 126. I was hoping for negative results of under 20. But I am at peace because I know that it's not necessarily an issue at all. I was prepared for it possibly not changing in fact. I think I read that some patients have their ANCA go up when they're in disease activity and some patients have theirs just stay up all the time.
    Thoughts?
    Gab
    Last edited by Gab122; 10-13-2016 at 10:39 AM. Reason: Typo/ message dictated to Siri. Never trust her! 😂

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    I asked for some input from the infusion center, where I got results. They just responded now.
    This is what they said "ANCA levels take several months to drop dramatically - more than a few weeks. We will continue to watch your ANCA levels over the next several months but so far it's heading in a good direction and looks good. "

    That makes me feel better.
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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    Quote Originally Posted by drz View Post
    My ANCA scores slowly decreased to the normal range after treatment. And they increased some when my residual symptoms increased and then went back down to normal range as residual symptoms faded some.
    Hi Drz,
    How slowly did it take to lower your ANCA scores? Many months? How high did you start.
    Gab

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    Quote Originally Posted by Gab122 View Post
    Hi Drz,
    How slowly did it take to lower your ANCA scores? Many months? How high did you start.
    Gab
    Initially Mayo said it was off the charts. One of my doctors later told me he had never seen one that high. But a couple years later it was back with in normal range. It goes up some during infections or increases in my residual symptoms but then goes back to normal as my symptoms decrease. My doctors say I am one of the rare ones where my disease activity seems to correlate with my ANCA scores.
    Knowledge is power! Wisdom is using it to make good decisions!

  8. #108
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    Gab, my wg dr. always says to look at the "Graph" and if things are getting better, and they did because your C-anca is much lower, then your treatment is working well. It took years for my C-anca to become negative, and about a year after starting rtx (I didnt get rtx before 2013).
    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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