I was diagnosed with SLE 8/12 on plaquenil and seem to be doing well. I have recently asked my rheumy if she truly thought that was my diagnosis as she makes comment that my ds-dna has been normal each time it was tested with their lab. Each time it is tested at my the doctors office i work for, their lab shows my ds-dna is high. I feel so much better with my symptoms but am in denial feeling maybe I was given the wrong diagnosis, feel like stopping my meds to see what happens but then I dont want to hurt..... SO......my question for any of you is could you have a positive ana and ds-dna at one lab and normal at another......Thanks in advance!
First, a bit about the meaning of the dsDNA test. A + anti-dsDNA is not even necessary for diagnosing lupus at all, nor is it even present in a lot of cases! Having an abnormal dsDNA means you are highly likely to have lupus (it’s not really seen unless you do), but not having it has no bearing on whether you have lupus or not. It’s just another factor of many that can help diagnose. A doctor friend told me that basically if you’ve had a + dsDNA ever, you almost certainly have lupus (assuming you have symptoms of it that led to testing for it, see below.)
Second, all of the antibody tests in lupus patients are notorious for flipping positive and negative all the time, which is the primary reason it’s so hard to catch it in the act and diagnose it. This leads to much frustration by those of us who know we have lupus and that it’s well-managed (praise be!) by our med regimen and then some new doc we have wants to throw out the whole thing based on a negative ANA (even though there was a prev positive ANA.)
In any case, symptoms are a significant part of diagnosis. You can have a bunch of positive tests, but if you’ve never had symptoms, you probably won’t get it ID’d in the first place, and you certainly wouldn’t be put on meds for symptoms you don’t have (maintenance during remission is a totally different story!!)
Were you pretty miserable with symptoms? I’d imagine you’re relieved to be feeling much better… And if so, be careful because the plaquenil probably put you into a remission (yay!!!), which is the ideal situation since lupus doesn’t go away. If plaquenil alone controls it, it’s a somewhat milder case (not to say you don’t have horrible fatigue or a lot of pain or sun sensitivity, but just that it isn’t attacking as many tissues and can be controlled more easily with milder meds) and you might end up not needing the meds at some point when things have been stable… But plaquenil is the primary drug for all of us to prevent recurrences of flares (basically, maintenance.)
Hope that helps!!
Brynn
Thank you so much, yes it does! I have many symptoms prior to the plaquenil and still have the breakthroughs now and then. I do think that i have a milder case and am thankful for that, its just frustrating with the doctor questioning. For once you feel better and then its questioned.....UGH!!
Again thanks so much, this was just the first time I began really denying it with her help. I really appreciate the descriptions above!
XOXO
Monica
Faladora said:
First, a bit about the meaning of the dsDNA test. A + anti-dsDNA is not even necessary for diagnosing lupus at all, nor is it even present in a lot of cases! Having an abnormal dsDNA means you are highly likely to have lupus (it's not really seen unless you do), but not having it has no bearing on whether you have lupus or not. It's just another factor of many that can help diagnose. A doctor friend told me that basically if you've had a + dsDNA ever, you almost certainly have lupus (assuming you have symptoms of it that led to testing for it, see below.)
Second, all of the antibody tests in lupus patients are notorious for flipping positive and negative all the time, which is the primary reason it's so hard to catch it in the act and diagnose it. This leads to much frustration by those of us who know we have lupus and that it's well-managed (praise be!) by our med regimen and then some new doc we have wants to throw out the whole thing based on a negative ANA (even though there was a prev positive ANA.)
In any case, symptoms are a significant part of diagnosis. You can have a bunch of positive tests, but if you've never had symptoms, you probably won't get it ID'd in the first place, and you certainly wouldn't be put on meds for symptoms you don't have (maintenance during remission is a totally different story!!)
Were you pretty miserable with symptoms? I'd imagine you're relieved to be feeling much better... And if so, be careful because the plaquenil probably put you into a remission (yay!!!), which is the ideal situation since lupus doesn't go away. If plaquenil alone controls it, it's a somewhat milder case (not to say you don't have horrible fatigue or a lot of pain or sun sensitivity, but just that it isn't attacking as many tissues and can be controlled more easily with milder meds) and you might end up not needing the meds at some point when things have been stable... But plaquenil is the primary drug for all of us to prevent recurrences of flares (basically, maintenance.)
Hope that helps!!
Brynn