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Positive ANA at 1:1280 and now negative??

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Posted 6/18/2010 8:27 PM (GMT 0)

Hello,

I am new here.  I am 40, diagnosed with lupus at age 36.  My ANA at that time was 1:320 homogenous pattern.  It progressively increased, going up to 1:1280 six months ago.  It is now negative.  I am stunned.  I know the ANA can go up and down, but this seems extreme.  They tested my blood twice, two separate ways.  Also, I used to be positive for antiphospholipid syndrome, but now those results are negative.  In fact, every single lab result was within normal limits.   

Prior to being diagnosed with lupus, I always felt bad (fevers, mouth sores, etc).  I do not want to be sick, but having a diagnosis helped me to at least feel like I wasn't going crazy and everything was in my head.  Now I don't know what to think.  I guess I should be happy about having perfect lab results, yet I still do not feel good.   

Has anyone else experienced anything like this? 

Thank you for your input.   

Posted 6/18/2010 8:59 PM (GMT 0)
Are you being treated? If so, are your symptoms being managed? Sometimes with treatment our bloodwork shows up fairly normal, but we can still have symptoms. If you are still feeling bad and your symptoms are interrupting your life, then I would anticipate that your rheumotologist would continue treatment.

For me I consider the goal to be to eradicate and/or manage my symptoms so that I can resume a somewhat normal life -- the actual diagnosis isn't my primary concern. My labs have been fairly normal for over a year, but I doubt they would remain that way if I stopped taking all my medications. And I'd beat my rheumy if he suggested I was magically cured...lupus doesn't just disappear, although it may become "dormant" or "quiet".

Hope you feel better sooner rather than later!
Posted 6/18/2010 9:10 PM (GMT 0)
My lab work is all normal yet I have been in a major flare, the lab work available (ANA and such) vary greatly for many reasons and can even change depending on lab and hour drawn. I would ignore the labwork and continue treating your disease. If your doctor tries to claim you are cured find a new one.
Posted 6/19/2010 1:21 AM (GMT 0)

Thank you Lynnwood and Redrose for your responses; they are validating to me.  It all makes sense, but it seemed so extreme.  To have a positive ANA for so long that suddenly became negative seemed strange to me. 

Yes, I have been taking Plaquenil since I was diagnosed--so going on four years now.  My symptoms are more controlled now as compared to where I was at 4 years ago, so I really shouldn't be such a whiner.  This is a brand new rheumatologist for me since we just moved to the area and she seems good.  She told me to continue taking the Plaquenil and we will redo labs in 3 months.   

Redrose--I have fibromyalgia as well.  I was dx'd in November 2007.  I have been on Lyrica since then.  What do you take for your pain?  I have been having a lot of breakthrough pain and have had to increase my Lyrica a few times.  Also, my fibro fog/memory loss is horrible right now.  I am sure a lot of my problems can be attributed to my fibromyalgia.

Thank you again for your help and encouragement.

Posted 6/19/2010 1:40 AM (GMT 0)
Hey Texas! well I gotta admit I have never seen that big of swing before. I would first be thrilled and second be skeptical. Maybe it was a bad test. One test does not a lupie make. LOL anyway I have been on plaq for 4 years too. I started with 1:2560nucleolar. the least I got down to was 1:1280. which is where I am now as of last month. I guess isif you are feeling good then keep doing what you are doing. You do know when you went from 320 to 1280 in two jumps right? because it doubles like 320 then 640 and 640 to 1280. Yeah it is alot I agree but the going from 1280 to negative is amazing. Let us know how you next test come out you really got me curious now.

hugs
carol
Posted 6/19/2010 4:28 AM (GMT 0)
I take skelaxin and use duragesic pain patches with the occassional vicodin for break through pain.
Posted 6/20/2010 2:36 AM (GMT 0)
ANA titers are considered unreliable for disease progression or treatment options; they are only useful in diagnosis. The titers commonly go up and down, even drastically and over short periods of time. There is not much evidence that this correlates to disease activity.
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