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What can cause ANA titre of 1:2560?

Autoimmune Diseases | Last Active: Jan 12, 2023 | Replies (111)
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@socalgirlntx

Hello. I came across this discussion group and read this post and immediately connected to your story. I wish I could offer a word of wisdom, but unfortunately find myself in the same boat. My ANA titer was very similar. Mine was 1:2580, which is really close to your numbers. I have yet to get an appointment with a rheumatologist so I am in the dark, other than getting a copy of the ANA report and then trying to look to the internet to find some answers. I don't have a diagnosis. My GP suspects Sjogrens Syndrome, with the possibility of additional autoimmune disorders. I am on a six month waiting list to get in with a rheumatologist, so I'm looking at 6 mos to a year to even get in with a specialist. I'm not very good at sitting and waiting, so I look for my own answers until I find answers from a professional. However, hearing your story makes me very nervous that I may never find answers even IF I'm able to get into a specialist.

I am curious about which specific antibodies you tested high on. My report shows very high SSA-52, SSA-60 and SSB antibodies.

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Replies to "Hello. I came across this discussion group and read this post and immediately connected to your..."
carpe_bean | @carpe_bean | Oct 25, 2022

Hi @socalgirlntx

I just now finally saw your comment - and others - on my original post from years ago. I know it's way past due, but I still wanted to respond and see how you're doing.

How ARE you doing? Did you ever get that appt with a rheumatologist? Did they do testing? Did they give you a diagnosis or any answers?

I never did get any definitive answers from doctors in Germany. After about two years, I stopped going entirely. One doctor recommended a gluten-free diet for five months, which was absolutely miserable and had zero effects. Another - ironically - recommended I stop going to doctors and stop trying to figure out what was wrong. I say ironically because he might've actually been right (for my personal situation - definitely NOT suggesting anyone else give up looking for answers to their own health problems!) My health continued to improve on its own, with a lot of patience, gradual return to the physical outdoors sports I love, and really just time. Considering how stressful doctor appts were, it was easier just dealing with the symptoms without dealing with them on top of it.

Funny you should mention it but Sjogrens was definitely something I considered early on! Not a single doctor I saw mentioned it, but it seemed to fit with what other people had written about online. Interestingly, my ANAs stayed really high for about a year, then gradually started to come down as my symptoms improved.

Autoimmune attack of some sort? Maybe. No idea. Just a really nasty virus? Who knows. I tend to lean toward the former since I had a similar bizarre, severe illness come on abruptly in 2006 as well. That first time, all symptoms resolved within about a year. This second time, the symptoms were a lot worse for well over two years and six years later they still haven't resolved completely.

I'm still expecting whatever this was to just hit again some day. In the meantime, I try to enjoy how good I feel NOW.

I really do hope that you've gotten some answers or at least that you're just feeling better!

~Carrie

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