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Thread: Understanding the cANCA test

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    Default Understanding the cANCA test

    A friend of mine asked me recently about my ANCA tests in the past. This is a question I kept asking myself but since I started to feel so much better after treatment, I never bothered to ask anyone. I was too happy feeling good than to care anymore.

    If Wegener's is a systemic ANCA associated form of vasculitis, why have every single ANCA test I have done prior to diagnosis up to now come back negative?? The negative test was the reason why my diagnosis was so far delayed causing more damage up to the kidneys. The only thing that test did was give me a false sense of hope, thinking I'm sick with something else. It was suspected when I had the tube inserted in the left tear duct April 2009, the "suspicion" of Wegener's came up on my medical report. That was when I googled it to find out what Wegener's meant...and found every symptom I had. There were more symptoms that I didn't have for sure, but the kidney problem came in 8 months later. Even with renal involvement, the next ANCA test still came back negative. It was when the nasal biopsy was done February 2010 I got the diagnosis so that I could start treatment as soon as possible.

    My entire life, I always thought of a negative test as something good... especially if you're checking for a particular infection. That made me say...I might or might not...be infected with Wegener's. But when the test came back negative, I had a sigh of relief for nothing. Only to find out I would still have this deadly disease if I didn't get the diagnosis through another source! It's amazing how the mind works when you lack the education.

    So, again, if Wegener's is ANCA associated, why do some come up positive and others like myself come up negative, but yet we both have the same disease?
    Last edited by Chadwyck; 04-08-2014 at 09:35 AM.

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    I think that there are so many variables to this disease, the medics are searching for something they can hang their hat on. They need to realize, It's not Anca , we already know.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    If anyone had the answer(s) to that question, we most likely wouldn't have WG or it would at least be vaccinated against or somesuch...jus' dreamin'.....
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Quote Originally Posted by Dirty Don View Post
    If anyone had the answer(s) to that question, we most likely wouldn't have WG or it would at least be vaccinated against or somesuch...jus' dreamin'.....
    OMG.... I was just going to say that! LOL

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    I like dreamin'
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    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.

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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.
    Please tell me you weren't driving to reply... I can wait until you're parked somewhere safe. So you had a negative test all along or positive to negative? I don't understand that part. My biggest question would be, is a positive ANCA patient in more danger than a negative ANCA patient? What I do know for sure is that a positive ANCA gives you your diagnosis and treatment quicker than me but that's all.

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    I had a pos. ANCA, went into remission with a neg. ANCA, then relapsed. My ANCA at the beginning of relapse was partially positive, but I did not feel bad and I was on treatment. But I was in renal failure. I don't understand it either.


    Sent from my iPhone while driving on the freeway.

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    they did not do the ancs test on me until after the wedge biopsy of lungs it too was negative it is amazing

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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.
    maybe this link can help:
    Predicting relapse in granulomatosis with polyangiitis: The role of biomarkers - EM|consulte
    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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