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Thread: Question about ANCA Scores

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    Question Question about ANCA Scores

    Newly diagnosed this summer. Wegener's tried to kill me, but thankfully wasn't successful. I just had my 2nd ANCA test post-hospital. The C-ANCA and P-ANCA were negative for the first time, BUT...for the first time, the PR3 Antiproteinase was Positive. What does this mean?

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    The key question is how do you feel? If you're feeling well, an elevated pr3 may be just a small concern. Many of us have a number or two that's a little abnormal. If it's stable over time and you feel good, it's probably ok. If you start to feel worse, other labs will be unfavorably abnormal too.

    My doc hasn't ordered ANCA or pr3 labs in five years. My regular labs (every other month) are a CBC, C-RP, CMP, sedimentation rate, and urinalysis. While I have a couple numbers that are slightly abnormal, I feel fine and live my pre-wegs life.

    Hope this is helpful...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Each case is different. For some, pr3 has no meaning. For others, me included, pr3 is a valid indicator for wg activity. Keep an eye on it. In my case when it is up, it predicts a flare.
    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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    Thanks for the reply Pete. I feel tired, but have attributed it to getting used to the lower levels of Prednisone. I've also had some extra stress since January due to some other family health issues and have learned that stress certainly plays a role in this. I had some of my original symptoms of fluid on the ears, cough and sinus drainage, but they have resolved. And, it's allergy season here, so who knows. I had a Rituxin infusion this past Thursday and another scheduled next week, so hoping that it will keep any flare I might be having at bay. What else do they do when you have a flare? I'm sure more Prednisone....

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    Whether or not ANCA numbers are meaningful after diagnosis is debatable, and/or depends on the patient.

    Like Pete, I haven't even had the test in quite a long time. I get the same standard labs that he mentioned, since my docs don't think the ANCA/PR3 numbers are helpful except in establishing diagnosis. The significance (or lack of) your results is something to discuss with your doc, right? During the first year or so after diagnosis, I was stressing about every out of range lab result to an extreme degree. I've since learned that the results are always going to vary and to not worry about it so much.

    I will say that for me stress is a major trigger for symptoms, even though I am in remission. I think there is wide agreement that stress is a trigger for all kinds of auto-immune issues.

    I have those eustachian tube issues you mention, post-nasal drip, etc. constantly, to one degree or another. Our allergy season is already starting here with lots of dust in the air, and it definitely makes things worse. I guess I have had "flares" but mostly my symptoms fluctuate between minor to very bothersome, and I've learned to know what the range of normal is for me.

    I think after absorbing the fact that you have this odd illness, it still takes quite a while to figure out your new normal, and being vigilant all the time is very tiresome.

    Not sure that is helpful at all... but best wishes....

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    Yes, very helpful...thank you. When the office called with the results, I was told "the test came back positive, which tells us that we are are the right track with the treatment" I asked why the numbers flip flopped and the nurse couldn't give me an answer. I know that this disease is tricky to treat. When I came home, I was terrified of not knowing the symptoms of a flare and was afraid that I'd end up back in the hospital. I've calmed down now, somewhat and understand that hopefully...I won't have an event like the one I had that led to my diagnosis. It's just hard, BUT...not as hard as many friends and family that are struggling with other diseases. It helps to keep perspective.
    gratitude.jpg

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    I also read your other thread. It is possible that if you reduced your pred too fast (and it seems that you might did) that your symptoms might be back a bit and mimic a flare. If you go back to the pred doze before the symptoms started, it might relax it all. Then wait for a while. Tapering down the pred should be gradually and slowly.
    Stress indeed can be a triger. But you are now getting rtx, it will do what it knows to do. Each one is different with his reaction to rtx. For some it works faster then for others.
    Hang in there and please update us. It should get better. Sending prayers ❤
    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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