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trevorhoffman

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 #1 

Hello.

I'm writing in hopes that I might receive some good ol' pragmatic advice from the community. A year ago, after noticing fairly significant hair loss, my 27yo wife took an ANA titer test where the result came back at 1:2560. Fast-forward a year, and while she went through a 6-month lull in the hair loss, her hair is back to falling out at a brisk pace and she's had a second ANA test which showed the same titer level results. I understand that some significant percentage of the population goes through life being ANA positive and is never affected by it, but the doctors we've seen have also been clear that this level of titer is "a real signal" and one that makes the situation much more serious as we look to combat future possible medical complications.

That's the bit that's causing me a lot of anxiety as I try to keep my calm and support her. What I'm really hoping to understand is, how bad a prognosis is a titer that high? I know we need to help her manage her stress, help her get more sleep, maintain a better diet etc., but it's hard with a 2yo and 3yo at home. So I'm going incognito with this inquiry so as to avoid compounding her stress. Is she pretty much guaranteed at that titer level to face significant, life-threatening issues later in life, or is my worry getting the best of me? TBH, I just don't know how much peace of mind I should have that she only has one symptom today. Please don't get me wrong, I'm grateful that she only has one symptom.

Many thanks for any advice,

Trevor

Raglet

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 #2 
Hi there - it's important to know that the ANA does not correlate with disease activity. So, a higher ANA does not mean more severe disease. Many rheumies don't even bother to test the ANA after getting a positive result as it doesn't correspond with disease activity. To look at disease activity things like compliments, ESR, anti-ds-dna's, compliments, wbc etc are used as they go up and down with disease activity. My ANA is always 1280 or 2560 - they double each time so these two are only one step apart. The ANA is just used for diagnosis, not for monitoring the disease. Hope this helps
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upstater

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 #3 
I think what when the doctors say that her titer is a "real signal" they mean that it's not a marginal positive. Not that it's at a level that predicts a life of misery or poor prognosis. Sometimes people get a low positive like 1:80 or sometimes even "healthy" people can be at 1:160. Above that, there is greater suspicion some sort of autoimmune process going on.

Like Raglet said - they use other markers to monitor or assess for any activity or problems they may need to address. ESR and CRP look at inflammation, labs that assess for things like anemia, kidney and liver function, etc.

Did they give her a diagnosis or any treatment? Do you know if any if any of her ENA's were positive; ie: dsDNA, Smith, RNP, etc??
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