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  • Systemic Hide and seek blood tests?

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    Old 01-14-2017, 02:39 AM   #1
    ShayOShea
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    Unhappy Hide and seek blood tests?

    I was diagnosed with Lupus in the '80's only had 2 positive ANA's. Back then I was treated with steroids and plaquenil. Since then I have had negative ANA's both mother and my daughter were diagnosed with lupus. I am am now told I don't have Lupus because all my test results are negative. I do have some elevated results but still in on the high "normal" range. I also was diagnosed with APS in the 90's and treated with coumadin and lovenox then aspirin now on plavix. I am now told that I do not have APS either because all my blood tests are normal. Except for elevated PTTLA and Igg1 which are high end of normal. I am confused. Doctor doesn't want to treat me unless my blood work can confirm diagnosis. My daughter was diagnosed with APS 11 years ago when pregnant with her daughter and was just recently diagnosed with Celiac Disease and positive ANA. Really confused. Help any thoughts? I honestly do not think I am crazy...

     
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    Old 01-16-2017, 06:59 AM   #2
    VeeJ
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    Re: Hide and seek blood tests?

    Hi and welcome. You're not crazy! My guess is that your doctor is questioning your old lupus dx because it might have been predicated only on the ANA lab test. If that's the case, I'd agree actually, because the accepted approach is to use the lupus classification criteria. You can find these in the "sticky post" section (look right above the user threads). You'll see 11 criteria. Generally, but not always, you must meet 4 or more to sustain a dx of systemic lupus. Meaning, ANA alone is never diagnostic of anything. Why? Because it can be positive in multiple conditions; and also, it can be positive only because of a passing infection (viral or bacterial) or to a family tendency.

    But nonetheless I find your 1900's APS dx interesting because while I think APS "can" occur "standalone", I believe it's accompanied by lupus in the vast majority of cases, but that there may be exceptions (see below). You could ask. Do you have copies of the tests on which your APS dx was predicated?

    Re recent APS tests. Were AB tests also done, which would include lupus anticoagulant, the various antiphospholipids (which would include anticardiolipin plus about 8 others), and VDRL (no rudeness whatsoever intended, this is only because the syphilis test can produce a false-positive in people with APS)?

    I keep a great lupus hardcover in which the highly acclaimed author covers lupus, APS, and "close cousins". He says that if ANY of the APS tests above is positive or *even just borderline*, he does additional tests (which he then lists).

    Also, this author discusses *two* kinds of PTT tests & explains why he runs both. I interpreted this to mean that there are "subgroups" of APS patients who can produce different results on these PTT tests.

    And this author makes additional points that may be germane to your history. Says anticardiolipin AB's can appear/disappear as APS waxes/wanes. (Think that's why two sets of labs are always required for the original APS dx, spaced at least 12 weeks apart!) That some *lupus* patients have APS AB's only while pregnant. That steroids can make APS AB's decrease or even disappear entirely.

    I think your questions are complex but that this hardcover could really help you develop a concise set of questions. In your shoes I'd head straight to my local library. Please touch base soon, OK? Hugs!

     
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    Old 01-17-2017, 07:08 PM   #3
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    Re: Hide and seek blood tests?

    Quote:
    Originally Posted by ShayOShea View Post
    I was diagnosed with Lupus in the '80's only had 2 positive ANA's. Back then I was treated with steroids and plaquenil. Since then I have had negative ANA's both mother and my daughter were diagnosed with lupus. I am am now told I don't have Lupus because all my test results are negative. I do have some elevated results but still in on the high "normal" range. I also was diagnosed with APS in the 90's and treated with coumadin and lovenox then aspirin now on plavix. I am now told that I do not have APS either because all my blood tests are normal. Except for elevated PTTLA and Igg1 which are high end of normal. I am confused. Doctor doesn't want to treat me unless my blood work can confirm diagnosis. My daughter was diagnosed with APS 11 years ago when pregnant with her daughter and was just recently diagnosed with Celiac Disease and positive ANA. Really confused. Help any thoughts? I honestly do not think I am crazy...
    No, you're not crazy. Blood tests for lupus can become negative while on treatment. Your family history is impressive with several autoimmune diseases, and I do not think your previous ANA or APS results should be dismissed. Many of these tests fluctuate over time and the whole picture of symptoms, family history and lab results must be considered. Don't let someone just dismiss you because of negative results one time, especially if you are still on treatment.

     
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