Higher the ANA more likely it’s Lupus?

[Hursty77]

I have gone from being treated for Lyme disease to being referred to a Rheumatologist because my ANA is 1:1280. When i’ve read up about Lupus it’s such a strong possibility. With a level this high is it more likely to be Lupus? Anyone else with ANA at this level i’d be interested in your stories. Thank you

[whisperit]

Hello Hursty77

As you probably know, a single positive ANA test is not enough to diagnose anything on its own, and some people with positive ANAs appear to have nothing wrong with them (a typical statistic from various sources would be that 3 people in 100 test positive at 1:160, but seem to have no clinical symptoms of any disorder). However, with repeated results and with higher titres, the chances that you have a systemic auto-immune disorder rise.

But a high titre still doesn't mean a specific diagnosis. ANA tests can be high in a range of auto-immune conditions, including rheumatoid arthritis, Sjogren's Syndrome, lupus/SLE, undifferentiated connective disease and others.

I had an ANA of 1:1260 when first tested some 3-4 years ago. Along with this, I had shortness of breath (which tuirned out to be interstitial luing disease) and pain in my hands hands. My initial diagnosis was "?Sjogrens syndrome/overlap syndrome/undifferentiated connective tissue disease" So my rheumatologist was spreading his bets!

After being put on hydroxychloroquine and steroids, the lung problem and pain almost completely resolved. Earlier this year, I developed myositis, another symptom of a vigorous auto-immune resonse, and my ANA went up to 1:2520. But my main diagnosis is now "Undifferentiated Connective Tissue Disorder".

It takes most of us quite a long time to get a definitive diagnostic label, and they may change. The important thing is to have a good plan for monitoring and treatment. x

[Hursty77 in reply to whisperit]

Thank you so much for taking the time to send such a detailed response. It’s very helpful. Since having my first child 11 years ago i’ve suffered with fatigue, tummy issues, bad back pain (5 facet joint injections), depression and nerve pains in my arms and legs, low platelets & Vit D. I’ve put most of it down to having kids and the changes that brings but i’m wondering if it’s something more than that. My sister has Raynaud’s and my maternal uncle died of MS. I just need to wait for an appt I guess and see what the Rheumy says 😊

[whisperit in reply to Hursty77]

If you haven't started already, it might be useful to keep a diary of symptoms and see if there is a pattern and how far there are getting worse, better or staying the same. The LupusUK leaflet on symptoms and diagnosis might be handy in highlighting the typical main indicators lupusuk.org.uk/wp-content/u...

[KayHimm]

What are your symptoms? Did your doctors do the ANA test because they felt Lyme disease did not fully explain your symptoms? Your case sounds complicated. This may be helpful. My diagnosis is undifferentiated connective tissue/lupus-like connective tissue disease. I may actually meet SLE criteria. However, my rheumatologist views my low titre ANA as well as normal complement as leaning away from lupus. So, yes, high titre ANA in the context of certain symptoms has a certain significance. Although healthy people will have random positive ANA tests, presumably your test was done with a purpose. In other words, they were looking for autoimmune disease. The diagnosis is very, very complicated but it sounds like you have good doctors who are being very thorough. I know Lyme disease can be tough. Now you are facing new tests. I really hope they get to the bottom of your health issues. Try to be patient and remember it is the total picture of lab and clinical evidence that leads to diagnosis.

[Hursty77 in reply to KayHimm]

Thank you so much for the response and your kindness with your words. I have suffered with fatigue for as long as I can remember but in the last 11 years just put it down to having 3 kids, being depressed etc. It has gone up another level since the infected bite. I have chronic back pain for which I had 5 facet joint injections and an epidural 2 years ago. My knees and elbows are stiff and slightly painful which is why the ID dr ordered a ANA test. I have been getting intermittent pressure pain in my chest, weird sensations in my legs and random aches and pains all over. My family history is not great either - my sister has Raynauds and my maternal uncle had MS. I also have ITP and endometriosis. I’ll be honest i’m going to be more shocked if I don’t have it than if I do. Thanks again x x x

[KayHimm in reply to Hursty77]

I can hear now why your doctors have had a challenge. Lupus and Lyme have similar symptoms, and you actually had the tic bite. The Lyme disease, it seems, can even mess up the testing. But your doctors are on top of it. With your ITP and highly positive ANA, your ID doctor has reason to refer you for evaluation. The sub-serologies the rheumatologist will run will likely make the picture clearer. There is a lot going on with you that is complicating diagnosis. Rheumatologists are considered to be the super detectives in medicine. So you are in good hands. Keep us posted. And all best wishes.

[Hursty77 in reply to KayHimm]

Will do, thank you x

[Dalollies]

Mine is 1.180 and I am told even though I have many symptoms they can't say I have a autoimmune disease. I had it checked 2 more times and it was negative. I just had it checked again and it is positive again but low. I just wish they would treat people who have so many of the symptoms.

[Hursty77 in reply to Dalollies]

Thank you for sharing your story and replying, i hope you get the answers and treatment you need soon. It seems harder when it’s borderline as you just don’t have a concrete answer. I guess that may be one thing in my favour that it is high. Good luck x x c