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Question re: ANA results

Discussion in 'Immunological' started by Gingergrrl, May 13, 2016.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I was wondering if abnormal ANA titer results often correlate with ME/CFS vs. another condition?

    Mine were positive at 1:160 (normal is below 1:40) and had "speckled pattern."

    Am not asking for diagnosis but rather what this could mean in general terms or if others usually have this?

    Thanks in advance!
     
  2. halcyon

    halcyon Senior Member

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    There's an older literature review floating around that summarized 8 studies that included ANA determination. In those 8 studies, the percentage of CFS patients with positive ANA ranged between 0 and 32%. So the answer, like most things with this disease, is probably "maybe."

    As far as I understand speckled ANA is usually a lupus thing but it's probably not just that.
     
  3. Denise

    Denise Senior Member

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    I have heard of people who sometimes have positive ANA results and other times do not. And have also heard of with and without speckled patterns.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    Thank you both for the info and I made an appt with rheumy for next week to go over the results. It's a complex situation b/c of other factors but am hoping if nothing else, we can discuss my ANA results in light of all my other auto-antibodies and really like this doctor and hoping I can work with him ongoing.
     
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  5. daisybell

    daisybell Senior Member

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    I was told by the rheumatologist that 1:160 levels did not necessarily mean anything in terms of disease, and that lots of people have raised levels at that dilution. I think by the time you get to 1:640, or 1:1280 (which I have) the doctors are more easily convinced that the levels are indicative of a disease process.
    But @Gingergrrl I think that your raised level should be seen as another indicator of the fact that you have auto-immune issues - even if this doesn't mean that particular antibody is causing you problems.
     
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  6. barbc56

    barbc56 Senior Member

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    @Gingergrrl

    Good luck with your appointment. Keep us updated when you can.:hug:
     
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  7. AndyPandy

    AndyPandy Making the most of it

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    @Gingergrrl I have the same ANA levels and pattern as you. Nothing conclusive so far.

    Hope the appointment goes well!
     
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  8. Kati

    Kati Patient in training

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    i have always had high titers (1:1280) speckled pattern ANA. It is not alarming to the doctors who see me.
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    AndyPandy or Kati, did the doctors ever give you an interpretation of what this pattern means even if it is nothing alarming?

    I am wondering how it might tie in with all of the abnormal auto-antibodies that I have or if there will be further testing done?
     
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  10. Kati

    Kati Patient in training

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    @Gingergrrl i believe dr Edwards has touched the subject on several occasions if you care to do an ANA search in the forum

    What they have done for me is to see if the most common auto antibodies would show up and in my case they didn't find anything. I suspect i have an auto- immune process, but right now there is nothing on paper.

    I would suspect i have adrenergic receptors antibodies based on the german study and My POTS issues, but who knows until one gets tested?
     
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  11. AndyPandy

    AndyPandy Making the most of it

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    Same here.
     
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  12. Snow Leopard

    Snow Leopard Hibernating

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    ANA are only generated when the body has at some point attacked its own cells... It is (in my opinion) a result of disease, rather than a cause of disease.

    It is associated with certain autoimmune conditions (eg Lupus), but also other conditions such as endometriosis, and even certain infections and cancers.
     
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  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The situation is complicated but i think we know that ANA actually cause disease because maternal ANA cause neonatal lupus. As soon as the newborn has lost the maternal antibody it is healthy.

    Speckled ANA can occur in lupus but on its own is more often associated with a range of syndromes that do not include large immune complex disease (which usually manifests as rash, nephritis or cerebritis). The features of speckled ANA syndromes look more like the direct effects of antibody on cell function. Sjogren's is the best documented example, which has a speckled ANA associated with anti-Ro. Mixed connective tissue disease is another one - with a speckled ANA from anti-RNP. But there are probably fifty other antigens that can give speckled ANA.

    I would personally think a speckled ANA at 1:160 is very likely showing the cause of illness. It would be good to know what the antigen is but it may not be one of the ones usually tested for in the 'extractable nuclear antigen screen'. What is certainly the case is that speckled ANA is associated with severe fatigue in many situations where we do know the antigen.

    One of the reasons why some studies of CFS show nobody has speckled ANA is that this may have excluded patients from being in the study. Some physicians do not diagnose CFS in the presence of ANA. Which is why we need population based studies on raw data that do not prejudge diagnosis before group selection in order to get information on possible causal relations.
     
  14. aimossy

    aimossy Senior Member

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    "One of the reasons why some studies of CFS show nobody has speckled ANA is that this may have excluded patients from being in the study. Some physicians do not diagnose CFS in the presence of ANA."

    That is annoying to hear @Jonathan Edwards I've heard of so many people with ME/CFS having a raised ANA. If they are excluded, wouldn't we then possibly completely miss out seeing a subgroup altogether!? I think I saw someone quote around 30% having a raised ANA. This seems concerning to me - do we need to worry about this for current studies?
     
    Last edited: May 14, 2016
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  15. daisybell

    daisybell Senior Member

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    I have 1:1280 levels of anti-centromere ANA, with a diagnosis of CREST syndrome, but also a diagnosis of ME... Rheumatology are not interested as according to them I am asymptomatic/stable. Does my ANA result and/or my Graves' disease mean I don't have ME, or is it in fact that my ME symptoms are the result of my auto-immune issues as a whole? I wait for the day when I can have further testing, and indeed some treatment to remove the antibodies...... I'm sure my story is similar to many other people. That's where the diagnosis issues and the criteria fail us.
     
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  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think the whole thing is a muddle. That is why I am cautious about trying to pin down diagnostic criteria before we have any rationale for such criteria. I don't think there is one special causal process called ME. I think there will be many and if one allows Sjogren's and CREST to come under the umbrella they are two already.

    I am not sure why one would add a diagnosis of ME to a diagnosis of CREST because CREST can probably produce most of the symptoms people call ME. If you have ME symptoms you are clearly not asymptomatic - but I know a lot of physicians who re not terribly logical about this.
     
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  17. aimossy

    aimossy Senior Member

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    "I think the whole thing is a muddle. That is why I am cautious about trying to pin down diagnostic criteria before we have any rationale for such criteria." @Jonathan Edwards I agree about this personally.

    I am concerned that a possible whole subgroup is not being taken into account right now due to this, with clinicians possibly not referring people for research cohorts, by making positive ANA exclusionary. It seems an unfair exclusion - I mean I'm not jumping up and down - it's just I don't think this should be happening. I guess it will be dependent on the studies contextually as well, but generally I don't think this is good.
     
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  18. justy

    justy Donate Advocate Demonstrate

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    I also have a positive ANA, lowish titre and speckled pattern. I also have EDS III and a consistently elevated IGM and a persistently slightly elevated ESR- all I can say is that once my lupus antibodies, and shirmers were negative the GP and consultant lost all interest in me. They just say I have CFS...

    This whole business of 'oh lots of people have these elevated and aren't ill' is ridiculous if the patient in front of you is patently ill. I have been bed or house wheelchair bound with crippling joint pain, fatigue and severe neurological issues and the NHS describes my results as not meaningful!! I am literally at my wits end and have given up even asking them for help - they are also quite happy to forsake me to a private Dr in another country because then they can continue to pretend everything is ok when its not.
     
  19. justy

    justy Donate Advocate Demonstrate

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    I just want to add Ginger, that im glad you have been tested to find the antibodies - as far as my care goes, negative for lupus means give up!
     
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  20. aimossy

    aimossy Senior Member

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    People can be perfectly healthy and have a raised ANA and raised ESR though @justy which makes this even more difficult. It means this cohort might have trouble getting studied at all - and another reason why I agree with Prof about criteria difficulties. Just the same as I wouldn't want anyone not having a raised ANA who fit key criteria/profile to not to be taken into account.

    It does sometimes feel like a cop out when have elevations and so sick - I have them too. You get sent on wild goose chases, even when been diagnosed ME/CFS with all the classic ME/CFS story and profile.
     
    Last edited: May 14, 2016

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