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Thread: Understanding the cANCA test

  1. #11
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    I will jump in with info passed along by my docs. In the beginning I had my ANCA levels monitored. Now they no longer checked for it and I asked why not. It seems that it is not reliable as a great indicator of inflammation. There does appear to be a correlation between the Erythrocyte Sedimentation Rate or Sed Rate and inflammation when you compare it to the WBC. My docs look at the cReactive Protein (CRP), ESR and the WBC to determine if things are falling apart. Each of these is a marker for inflammation, but any one of them could be out of line and not be conclusive for a problem. My ANCA has been over 100 but the ESR and the CRP were normal. The Sed Rate appears to be the most telling. This is why the docs make the big bucks but it is also why we need to ask the questions.

  2. #12
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    Quote Originally Posted by greenjeep View Post
    I was worried that I would relapse and not know it. So I asked my doc. How would I know if I just had a sinus infection or if I was in a relapse. He told me not to worry. That I would have routine bloodwork for rest of my life and if the ANCA became positive again, he would treat it. I later found out that a positive ANCA didn't necessarily mean a relapse either.
    So what happened? I relapsed while on Methatrexate and quickly went into renal failure without knowing it.


    Sent from my iPhone while driving on the freeway.
    Renal failure can indeed happen very quickly, within one or two weeks.
    My husband and I visited a meeting of the Dutch Vasculitis Foundation about a week ago and talked to a lady who was treated for GPA three years ago, went into remission and then got renal problems without knowing it. She now has a renal function of 20 to 30 %. Quite scary, we thought. She looked good now, and felt reasonably good, so she told us. She does a lot of volunteering work for the GPA-foundation, but is sometimes quite tired. She had to quit her 'official' job.

    How are you feeling now, Greenjeep?
    Please don't answer while driving...
    Living with WG/GPA since june 2010...

  3. #13
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    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. #14
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    I had psoratic arthritis for 2 years before other symptoms started to appear and then was diagnosed with wegs. I sometimes wonder if I had been checked for wegs then I could have started earlier treatment. Too bad docs don't know abt this disease. (And all my first cousins, 11 of us, have some form of an sutoi


    Sent from my iPhone using Tapatalk
    I am a strong person, but every now and then I also need someone to take my hand & say everything will be alright....

  5. #15
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    Sorry abt that. Post came up twice. Was for another forum


    Sent from my iPhone using Tapatalk
    I am a strong person, but every now and then I also need someone to take my hand & say everything will be alright....

  6. #16
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    Quote Originally Posted by darl-p View Post
    I will jump in with info passed along by my docs. In the beginning I had my ANCA levels monitored. Now they no longer checked for it and I asked why not. It seems that it is not reliable as a great indicator of inflammation. There does appear to be a correlation between the Erythrocyte Sedimentation Rate or Sed Rate and inflammation when you compare it to the WBC. My docs look at the cReactive Protein (CRP), ESR and the WBC to determine if things are falling apart. Each of these is a marker for inflammation, but any one of them could be out of line and not be conclusive for a problem. My ANCA has been over 100 but the ESR and the CRP were normal. The Sed Rate appears to be the most telling. This is why the docs make the big bucks but it is also why we need to ask the questions.
    Same tests my doctors look at - I don't think I have had an Anca test done for possibly 3 years now.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  7. #17
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    Quote Originally Posted by mishb View Post
    Same tests my doctors look at - I don't think I have had an Anca test done for possibly 3 years now.
    you should do an anca test, according to my wg-doc, every 4 months.
    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.

  8. #18
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    Chadwyck,

    Here is an informative presentation that also addresses your question: http://www.stritch.luc.edu/cme/sites...13_hariman.pdf
    The short answer is that while high PR3 levels alone are not a strong indicator for the general population, they can (under specific circumstances, such as when PR3 levels go down under treatment) be an early warning sign for individuals. That's why it is so important to have an expert looking at your numbers (at least as a backup to whoever is treating you).

    By the way, there is a wealth of valuable information on the vasculitisfoundation.org website for GPA, including talks by leading GPA specialists.

    Good luck to you (and to all fellow GPAers)!

  9. #19
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    Quote Originally Posted by chrisTIn@ View Post
    How are you feeling now, Greenjeep?
    Please don't answer while driving...
    I am doing better. My nephrologist put me on a Cytoxan infusion regimen that has brought my kidney function back close to normal. My old friend fatigue and wrestling wit the mental ramifications of this disease are my main issues today.


    Sent from my iPhone while driving on the freeway.

  10. #20
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    Oh, and not only am I driving and texting, but I'm also eating hot soup and dozing off.


    Sent from my iPhone while driving on the freeway.

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