Is seronegative lupus real?

The last time I saw a rheumatologist (in May) I was told that i couldnt have lupus because my ANA was negative, even though my ESR was positive along with protein in urine (both apparently signs of Lupus)

Based on all my symptoms, I think the only explanation is lupus. I also think I have Sjogrens Syndromedue to my severe dry, red eyes and dry mouth (which I thought was a medication side effect, but now I'm not so sure)

The rheumatologist I saw said it can take months or years to get a diagnosis :(

Is it even possible I could have lupus without positive ANA? Is that something that can change over time or if it's negative it'll always be negative? Thanks

7 Replies

oldestnewest
  • My ANA was posititve and then went negative. Sometimes my Rhemy talks about my lupus, or autoimmune arthritis (not rhematoid). It is all confusing, but I think it can change depending on what is happening in your body at the time.

  • Hi Kyla65,

    An ANA (Anti-Nuclear Antibody) test looks for antibodies in the blood and is normally requested when a auto-immune condition is suspected. It is generally known to cause a positive result for lupus in most cases but it is not necessarily conclusive. Usually GP's like to observe symptoms over a period of time before making a diagnosis.

    Have you discussed the results with your GP? Do they suspect lupus?

    Here is the link to our website where you can download or request one of our free information packs which includes our booklet 'The Diagnosis of Lupus' which i think you will find helpful - lupusuk.org.uk/contact-us/

    If you need anything else please do let me know.

    Best wishes,

    Hayley

    LUPUS UK

  • Hello Kyla: good question....we continue to discuss this here at regular intervals.

    Here is a link to a particularly good recent discussion here on forumabout diagnostic criteria which involves your question:

    healthunlocked.com/lupusuk/...

    Wishing you success as you go through the diagnostic prices

    🍀🍀🍀🍀 coco

  • yes therems lupus with negative labs , specially if you did the labs while talking steroids (cortisone) and /or immunosuppressants !

    you did the labs on any of these or you were on it for the past 6 monthes?

    if yes there is masking effect in the labs mainly by cortisone

    so that the antibidies becomes negative despite having lupus

  • The only steroids I've ever taken was prednisone and I haven't taken it since January, and don't take immunosuppressants :/ so I'm sure it's neither of those. Thank you for the reply though!

  • I was diagnosed with seronegative RA in 2013. My ANA at the time was 1:80 which is considered by many doctors to be more of a negative result than a positive. Two months ago my ANA was 1:640 which my doctor called "strongly positive". I have never had a urine test for proteins, but all other more specific tests have come back negative. Based on my symptoms and high ANA, she leans more toward lupus, MCTD or synthetase syndrome. She basically said that over time, more test results and symptoms may lead to a more definitive diagnosis. Since my symptoms are well controlled on Enbrel (for the RA) she recommended that I stay on it and wait and see what happens. This was all from a 2nd opinion because I questioned my 1st doctor's diagnosis. I was so glad that I sought out a 2nd opinion. Even though I am not much closer to an exact diagnosis, I have a better understanding of the autoimmune stuff.

    Don't be afraid to seek another opinion! If nothing else, you will hopefully become more familiar with whatever disease(s) you may have.

    I hope you get enough answers to at least find a medication that helps you. Three years after my treatment began, I am still waiting for my actual, for real disease to show it's ugly face!

  • Sometimes the 'actual' disease never shows itself. Mine is all over the place and I don't think this will ever change.

You may also like...