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Thread: Test results after 3 months of treatment

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    Default Test results after 3 months of treatment

    Hi all!

    I was diagnosed with SLE three months ago but put on plaquenil. My case seemed mild and besides my physical symptoms, the only concerning lab results were a very high ANA and a low C3 complement level. I had my 3 month checkup last week and received the blood work results yesterday. Over the phone the tech had told me that the test results were negative and the lupus was not active in my system.

    When viewing the lab results, I became confused. Some very basic tests had been run (CBC, metabolic panel, urinalysis, etc), and all came back normal like before. However, the complement tests were not performed, and that was the only test that had out of whack values in the first place. The only new test performed was a "random urine total protein with Creatine" test. This was different than the urinalysis test that also measured protein. In this test, I had a total protein level of 4mg/dL, which was lower than the normal range of 5-25.

    I trust my doctor but I have reason to not trust the office. I am concerned that perhaps I should have been given a complement test to check my C3, and I am concerned that the low total protein level is not a sign that all is normal like the tech said.

    Can anybody tell me what is typically tested during a routine quarterly test and if I have reason to discuss these results with the doctor? Thanks.
    Last edited by mastiff0; 09-10-2013 at 07:46 AM.

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    I don't know as much about the tests because (I am embarrassed to admit) I have never really understood them anyway. I have great docs and I do trust them to interpret that stuff. I always READ the test results, and since treatment they have all been in the "normal" range - if they weren't, I would be more concerned and probably more educated about the whole thing. I do think they do ANA and C3 every time, though - I get blood tests every 3 months because I am on Methotrexate as well as Plaquenil.

    HOWEVER - with Lupus and other autoimmune diseases, the blood tests are only a part of your health profile - perhaps a less-useful one than in many other cases. Many people are horribly ill with "normal" blood work, and some people with horrible blood work feel more-or-less okay...the relationship of these blood levels and actual symptoms is not fully understood. Heck - I lost my hearing in one ear to Lupus while my blood tests were "normal"! So along with your blood results, take into account HOW YOU FEEL - because that is really a more reliable indicator of disease activity than anything else.

    Also, don't ever feel bad about asking questions about your tests or results - it's your body! Especially so soon after diagnosis. Just give them a call and ask for somebody to walk through the tests/results with you. If the office staff isn't helpful, make an appointment with your doc, or if you feel fine and it can wait, bring the results to your next appointment and raise your concerns/questions then.

    Just my two cents...I hope folks here who know more about the blood tests will chime in too.

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    Some docs will never run an ANA again. Once it is positive AND a Lupus diagnosis is made they see no need. ANA's will fluctuate, especially if the meds are doing their job. Getting a Zulus diagnosis takes cumulative results meaning they don't have to be at the same time. Once the diagnosis is made some tests that are simply used for diagnostic purposes are not done again by some drs. Others will do the, constantly but I personally believe in the first approach.

    As for the C3, it may not be done again unless your doctor starts seeing signs of things worsening or he may do it at certain intervals. The tests your doc ran this time were ones to give him info on how your body is doing. He checked to make sure your kidneys were working ok (the new test) and checked white counts and bodily functions. Sounds to me like, so far, you found a good one
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    I finally did get my complement test results back- just took a few weeks longer than the other bloodwork. My C3 has increased (88 to 95) and is now in the normal range (>90). Curiously, my total complement CH50 is out of range now. It went from a 59, to ">60," where 60 is the high side of normal. I don't know what this means- from some quick googling, low CH50 points to active lupus, where high CH50 can point to many things (acute inflammation, some cancers) but not specifically autoimmune. Does anybody have any knowledge regarding what a high CH50 means when it comes to lupus?

    Despite the improvements in test results, I really don't feel different. Still lots of joint and nerve pain.

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