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Thread: how do you know when your in remission?

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    Default how do you know when your in remission?

    So whith all that go's on with wg how do you know when your in remission? Is it blood work, systoms gone,.or a.a.combo? And what kind of systoms stay if any? And how do you know if or when you come out of remision? These are questions for my dr I know but I would like your views on it. Thanks all...
    "My daughter is closer to me than my skin.. she is the arteries to my heart.. she is my life line.. The reason I breathe.."

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    Hello Alexiasmom, my doctors used a combination of blood test (C-ANCA and P-ANCA cells) and urine analysis (red blood cells) to "declare" that I was in remission.

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    knowing when you are in remission is easy. tests and how you feel. knowing when wegeners has come back is really hard-and for me very painful
    lightning crashes
    leigh

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    For myself, I usually have to go on how I feel since my blood work and urine have always been good.

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    They use lab results in combination with signs/symptoms. Wegs specialists use the BVAS, which you can measure yourself.

    I don't agree that determining remission is always easy. My docs--including Wegs specialist Dr Seo--thought I was in remission for 2 years when I wasn't. It was only in retrospect that we realized I'd had "smoldering" Wegs all that time. My labs typically look great. We have to go by symptoms.

    Remission generally occurs as a gradual process-- labs and signs/symptoms gradually improve.

    Also, the ANCA has been proven to be accurate only for initial diagnosis. When the ANCA was first discovered researchers hoped to use it to identify a flare brewing, or to measure how well someone was responding to a particular treatment. However, in the majority of people ANCA results are not accurate to measure disease activity. The ANCA might stay elevated even when one is in remission, or it might be low even with highly active disease. There are very few people whose ANCA is a reliable indicator of disease activity.

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    LOL...my definition for me of remission does include episodes of smoldering wegs. Infact, I think I may be the queen of smoldering wegs. My labs never look great when i am smoldering but I dont often get sick enough to want to treat it again. I personaly found it alot easier to recognize remission as my pains went away, I no longer had blood in my lungs and my labs agreed with these symptoms...I just find it really hard to figure out when I am out of remission. A cold can feel like a cold but then be a weg flare but still feel like a cold. I find it confusing.
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    I'm in the boat of prednisone making all my labs look good. I went from maxed sed rate to normal with nothing but prednisone. At the time I felt so much better I thought I was fine again, it's only after the fact that I figured out I wasn't in remission, even when the dr thought I was. Basically, pred work very well at masking most of my symptoms. I'm afraid my take is this is one of those things that varies widely by person.
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    Quote Originally Posted by delorisdoe View Post
    knowing when you are in remission is easy. tests and how you feel. knowing when wegeners has come back is really hard-and for me very painful
    The above plus lack of serious symptoms. Some residual symptoms can still be present and doctors may consider you in a drug induced remission--meaning no new treatment required at present time--just continuation of present med regime. You can have minor flares requiring minor adjustments. Big flares mean bigger guns.

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    Theoretically, I am in remission, but I have no idea how the docs arrived at that conclusion.

    I'm at that awkward age where it is difficult to tell if my pains are from getting old (I'm now 60) or if it is from gpa. Prior to dx, I had no pains and was strong and healthy, but now I have lots of muscle/joint pains and I know when I over do things. Very difficult to tell if it is from one or the other.

    So how did the docs tell? Beats me! My blood work usually has a half-dozen items out of range. I'm used to it now and when I pick up the test results, it's kind "ho hum, same stuff, different day".

    Am I in remission? Hmmm, let me get back to you in, say, 5 years or so.... :-)

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    I have never even talked to my doc about remission. I have had so many complications and other things come up at least once a month for the last few years that I really don't think I have been in a full remission, medicated or not, since 2007.
    Phil Berggren, dx 2003

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