Julie Rehmeyer's 'Through the Shadowlands'
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positive ANA

Discussion in 'Immunological' started by Omar88, Jun 5, 2017.

  1. Gingergrrl

    Gingergrrl Senior Member

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    Would this test ever have a different name in other countries or would it always be called "double stranded DNA antibodies"?

    Does an ANA titer of 1:160 mean anything or usually ignored? I did not realize that a titer of 1:640 usually indicated Lupus and had thought that it could fit with other autoimmune illnesses, too. Thank you and that is good to know.

    That is interesting and I showed restrictive deficits on formal pulmonary function tests for several years and the first time I have gotten a (still bad) but passing score was after ten months of IVIG.

    This was my feeling as well and that there is some underlying cause even if it is due to more obscure autoantibodies that doctors are not familiar with.

    @Omar88 I hope the ER/doctors can figure out your case soon and you will get some relief. Thank you for sharing your story and please keep us posted.
     
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  2. kangaSue

    kangaSue Senior Member

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    The formal name of the test is Anti-double-stranded DNA, IgG but can go by Antibody to ds-DNA, Native double-stranded DNA Antibody, anti-DNA or Double stranded DNA Antibody.
    https://labtestsonline.org/understanding/analytes/anti-dsdna/tab/test/
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    Thanks, KS, and I just checked the results from the tests that the Rheumy ran on me in March 2016 and I had one called "dsDNA, Farr" which I assume has to be the same one. The results were negative if under 8.0 IU/mL and mine was 5.7 so this must be why he said I did not have lupus. He dismissed my ANA of 1:160 speckled pattern as insignificant since the only autoantibodies I was positive for from his tests were the two Hashimoto's Abs (and did not know what to make of my other more obscure autoantibodies).
     
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  4. kangaSue

    kangaSue Senior Member

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    Yep, that's the same test that Jonathon Edwards mentioned. Dr Google tells me Farr is just one of the assay types that can be used.
     
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  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    As kangaSue says, there are various variations on the test name, one being the Farr assay which is a bit dated but is OK for dsDNA itself. Some of the other tests are not actually called anti-DNA assays as they pick up other antibodies as well but let's not get too complicated.

    Speckled ANA on its own tends to be associated not so much with lupus as with lupus like illnesses that are not mediated by large immune complexes so much as by small complexes or direct antibody effects on cells. Large complexes cause kidney disease and rash. Small complexes cause arthritis and pleurisy. Direct cell mediated effects probably cause fatigue but also cause small blood vessel damage and lung restriction. The typical link is between speckled ANA and something called mixed connective tissue disease. The ENA test was designed to pick up specific antibodies giving a speckled or similar pattern but to be precise you need a customised Western blot by a research lab. These other ANAs are just as important, so not knowing what the antigen is does not mean the antibodies are not causing symptoms.
     
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  6. Strawberry

    Strawberry Senior Member

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    So why does it seem that the ANA is so often ignored by our doctors? It seems there is a decent sized group of us here that have the speckled pattern ANA. Has this been researched yet? Couldn't this be a marker of some sort? Or is it too broad? Sorry if you have explained this, much of what is here is so over my head. It makes it hard for me to follow, along with my very poor memory!
     
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  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Speckled ANA, especially at lower titres probably occurs in at least one person in fifty and is not always associated with illness. SO we would expect a few dozen PR members to have speckled ANA anyway. As far as I know there is no clear indication that speckled ANA is more common in people with ME/CFS. But well defined illnesses that go with speckled ANA can present with fatigue. Most physicians are not that well informed about the relevance of speckled ANA but I cannot comment on the way members have been advised individually.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    So even though it is a bit dated, the "Farr assay" for dsDNA is still considered accurate and if negative, would rule out lupus?

    I do not really have fatigue but I have suspected small blood vessel damage and I have had lung restriction on PFT's and spirometry tests for several years. Would these things match with a speckled ANA titer?

    Can you comment more in general (not about specific members) re: how a speckled ANA usually presents re: symptoms or potential diagnoses (even if nothing to do with ME/CFS). I know you mentioned mixed connective tissue disease but was curious if it relates to other autoantibodies or specific symptoms? Thank you again.
     
  9. Strawberry

    Strawberry Senior Member

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    Thank you for that response, and I wouldn't expect you to advise us! Just keep us in line. :cool:

    So if speckled ANA is too common to be a marker, how about speckled ANA, low NK function and undetectable vasopressin? I can't speak for everyone here obviously, but I know some of us in the speckled club also have the NK function and vasopressin issue. I just keep thinking it might be an indicator of a special group. ?
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    All three of these are a perfect match with my situation (speckled ANA 1:160, very low NK function, and undetectable vasopressin). Yet I present so differently than others on PR, I don't know what to make of this.
     
  11. Strawberry

    Strawberry Senior Member

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    I know! Justy and I are definitely very similar in disease process, but she is now far worse than I am. I do wonder about MCAS though, as the three of have it! I'm still not 100% certain myself, but I have so many symptoms. That is a stretch though with my purely uneducated guess!
     
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  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    From what I am hearing the evidence on NK function being abnormal in ME/CFS is not really holding up. NK function is all over the place in various conditions and I have never been convinced it is a useful indicator.
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    I tend to agree and when I first saw my MCAS specialist in 2015 he said that his patients usually have low or abnormal NK functioning and he sees this all the time. That same year when I consulted with a mold specialist, she said that she commonly sees the same thing in mold triggered illnesses. Neither doctor knew about ME/CFS but neither found it even slightly uncommon that I had very low NK functioning and said that they see it all the time.
     
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  14. Strawberry

    Strawberry Senior Member

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    Now THAT is interesting. I thought it was specific to ME/CFS. Thank you both!
     
  15. OverTheHills

    OverTheHills

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    Should I try to see a rheumatologist privately about my ANA? (before I see what the Rituximab Phase 3 results come in with)

    I have homogeneous 1:160 ANA currently, and it has been up as high as 1:320 a couple of times and this does correlate with feeling particularly crap. My GP has tried to refer me to a public health rheumatologist but I 'don't meet criteria'.

    I have been tested for double stranded DNA antibodies, ENA, Lupus anticoagulant, Cardiolipin Abs, and Rheumatoid factor, all negative/normal.

    Had ME for more than a decade (13, 14 years? I don't like to count) without much pain but with POTS, IBS, and sometimes thyroid funnies, frozen shoulder, etc. Particularly strong seasonal remission in Spring (either hemisphere).
     
  16. daisybell

    daisybell Senior Member

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    I'm not sure what the benefit would be, to be honest. Unless they would be likely to offer you some treatment, I would save my money! I've been down that route myself, with a positive ANA, and got a diagnosis but it hasn't resulted in any treatment or improvement, and they aren't interested in following me up...
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    I would do it if it added to a total clinical picture of autoimmunity as part of trying to get a specific treatment. If you have several positive autoantibodies then I feel the positive ANA strengthens your case for autoimmunity. But if it does not add anything clinically, does not lead to further testing, or to treatment, then I would probably leave it alone.
     
  18. OverTheHills

    OverTheHills

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    Hi @daisybell /@Gingergrrl

    It was the quote above that made me wonder; although I have been tested for the antibodies he mentioned and my ANA is homogeneous not speckled. I have been inclined to save my money up till now (hopefully for a treatment like Rituximab, if not, for a pension).

    There is a benefit that might accrue to me from a diagnosis, even without treatment: I plan to go back to the UK one day and with a 'legitimate' diagnosis I am less likely to be shuffled into the MUS wastebasket and medically neglected.

    OTH
     
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  19. daisybell

    daisybell Senior Member

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    From what I was told when I was in the system.... rheumatologists don't necessarily consider a titre of 1:160 to be indicative of anything..... however, I don't know anything about the relevance of the homogenous pattern.
     
  20. kangaSue

    kangaSue Senior Member

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    Can your G.P. request antibody tests in N.Z. like here in Oz?

    A positive ANA result can be found in other autoimmune conditions too other than what you have already been tested for so it would be worth ruling out some of the more commonly found things in these other conditions such as acetylcholine and smooth muscle Ab or voltage gated calcium or potassium channel antibodies. GAD65 Ab is another more nondescript one, something which is tested for here as a matter of course when doing an ANA panel.

    You wouldn't be the first one to find out they have something other than ME, Lambert Eatons Myasthenic Syndrome for instance.
     
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