Anyone had change in ANA pattern? Mine gone from homogenous to negative to speckled

[Melba1]

Hello, just wondered if anyone’s ANA pattern had changed? Mine has always been homogenous (which I think is most common in lupus) but is sometimes negative even when I’m in a severe flare. It’s been negative all this year then last week was positive again (despite high dose steroids, immunosuppressants and rituximab which I had thought was the cause of it being negative) but showed a speckled rather than homogenous pattern. I know lupus can show as speckled too and know that it’s not a good marker of disease activity in me but wondered if anyone had anything similar or any knowledge of why it would change? (Or maybe just subject to the way a lab technician sees the pattern?!)

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[whisperit]

I have a vague idea that the patterns are linked to which particular anti-nuclear antibodies are present, or predominant. So (I'm making this up) anti-Ro tends to cause speckled for example. That might make sense in terms of flare activity if your flares are the result of more intense production of a particular antibody. But as I say, that's only a hazy kind of understanding and I could be completely wrong x

[Melba1 in reply to whisperit]

Thanks, that sounds logical! I think mine seems irrelevant to level/ type of disease activity as it’s been negative at my very sickest and positive when I’ve been in (clinical) remission. Will keep an eye on the changing patterns - if I’m ever told 🙄 I only found out this one because I requested test results for another specialist appointment.

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[phirestar]

questdiagnostics.com/dms/Do...

I’m in the USA but this might be helpful if you’re looking at patterns. I’ve had 3, 8/15 pointed toward sjogrens, 3/18 negative, 9/18 positive, speckled pattern titter 1:160 and a completely negative cascade.

[Melba1 in reply to phirestar]

Thanks! I wonder why so many of us sometimes have fluctuating positive/ negative yet the drs didn’t seem to be aware this happens? X

[phirestar in reply to Melba1]

From what I’ve read, Sle is sometimes difficult to dx. There seems to be a ‘grouping’ +symptoms for antibodies that point toward certain dx’s. It also seems to make a difference if in flare or the active state of the disease. Sle has many overlapping symptoms w some others. Sle has been ruled out for me but biopsy was positive for DLE. In the states it often depends on the medical practice and network protocols whether testing is done or not. Some docs just throw pills at a symptom so you can collect multiple medicines by symptom without an overall dx.

[Hidden]

I’m always nucleolar pattern but I did read somewhere once that the patterns can sometimes change as the disease itself changes course. Or perhaps I’m confusing this with blood groups?

I think the speckled is somewhat more associated with Sjögren’s but I could be wrong. Around 70% of those with Sjögren’s will be ANA positive and 90% of those with Scleroderma will be too.

I’ve noticed that my 3/5 positive readings have gone down in number from significantly positive to only low positive of 1:80 over the past 2 years. I assumed this was due to Mycophenolate but obviously not as I’d been off it for 6 months last time it was run.

And I definitely felt more poorly last time than when it was 3x higher two years ago.

My latest theory is that it only reflects the RA side of my Sjögren’s. So when I very first presented with joint pain and stiffness my rheumatic factor was positive (never had ANA done back then🙄) twice in succession but never has been since. Then, when ANA was tested again in 2016 it was strong positive and I had swollen knuckles again. My conclusion is that for me it only shows up high when I have RA type activity.

[Melba1 in reply to Hidden]

That’s interesting. I wonder if it’s similar for many of us, that it corresponds to certain type of activity but not others. I know these autoantibodies are known for often being absent/ non representative for those of us with brain/ nervous system involvement . Kidney disease is the most linked with autoantibodies - hopefully more tests will be found that identify more...

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[Hidden in reply to Melba1]

Well your question here certainly made me think a little more deeply about why my ANA has come down incrementally over the past 2 and half years - when I really only feel I’m getting worse.

The only two things I can think of were that the year my ANA was highest was the year when my hands started swelling and locking again. I thought the MMF was the reason it then remitted but my rheum said she thought I probably have a relapsing/ remitting type of RA which comes and goes as it likes regardless of DMARDs.

Also this year of diagnostic clarity in 2016 was the year when my BP was least well controlled. My e-GFR suddenly dropped from >80 to >60. I’ve had various degrees of trace blood in my pee for as long as I can recall and I believe I have autoimmune pancreatitis - but the kidney disease is very mild and the doctors blame it on essential hypertension. So I really don’t think my ANA relates much to this and I do think it’s the synovitis side of things which takes it up of down. Certainly the neuro stuff doesn’t influence it one iota as when I was hospitalised in SFN agony - all my autoantibodies were negative apart from equivocal ANA. No joint pain at all.

I do seem to recall reading somewhere that the nucleolar pattern is different to the others and, once up, the numbers aren’t that significant. But it generally doesn’t come down as mine has- albeit still positive.

Also pancreatitis (I think - or maybe liver) has only recently started flaring up again and I’ve just just had my 3rd night up with this particular pain in a month - so got to phone GP and arrange amylase blood tests as per instructions this morning. However seriously they seem to take if - synovitis is definitely the least of my problems! X

[Melba1 in reply to Hidden]

It’s very unknown still I think, lots of people seem to have ‘intermittently positive’ ANA that’s not related to disease activity.

I’ve just been handed my list of current conditions from GP and someone (sure not rheumy as I have all his letters) diagnosed me with RA last year in addition to lupus?! I have no idea who and no idea why as I’m almost certain I don’t have it 🙄!!

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[Hidden in reply to Melba1]

Lol that’s one for the Cambridge Uni LUK research questionnaire doing the rounds then?! RA is nowhere to be seen on my list since I relocated and yet I couldn’t get rheumy 1 to shift on it! Whatever you do avoid Sjögren’s - it’s the kiss of death as diagnosis’s go so I’ve learnt. They all just hate SS and the most difficult patients it brings through their doors. I admit I have some sympathy with this perspective now! X

[dgleds]

I believe mine was 1:320 homogenous the first time, then next time it was fine speckle...They had me on Hydroxychloroquine for about 2.5 years, and the ANA has never been seen again so far....Im off all meds to do with lupus and have been for quite some time and feel normal again. So whatever I had seems to have been knocked out of the ball park with the lupus meds anyways..They dont even check me anymore, but Ive had so many new Doctors and old ones have left...I feel ok.