My PCP said I might have lupus and asked me to go see a Rheumatologist. I did, he tested me, my ANA came back negative, he retested, still negative, 3 months later, retested, still negative. But my dsDNA was at 13.8 the first time, and 3 months later right now it's at 17.9. I don't have any symptoms.
My joints were swollen a few months ago, and I got rashes all over my body, and I thought it might be due to a food that I ate that I hadn't eaten before, but since my PCP insisted that I had something, most likely lupus, she said, so I went to a Rheumatologist. I had since eaten the same food again, got rashes, but no swollen joints. I haven't had the same symptoms again after I threw away the spice packet that caused all of these.
So since my dsDNA is positive, what does that mean? I don't have other symptoms other than dsDNA being positive. All the other test results are normal. Does that mean I have lupus or something else or nothing?
It is possible to have a negative ANA but a positive specific antibody test, though this is very uncommon; for diagnosis a positive test for a specific antibody is more important than is a negative ANA test. Maybe RO Lupus (that's very rare). I have MCTD so bare with me here, still know a little bit. I'd think (now someone here ought to be able to answer this) but I'd think a Lupus rash would be more so related to a skin disease that doesn't disapear. Your rash does sound more like hives/allergy. Was it ichy at all? Do you have any kidney problems or any major organ problems? If not, and if your not at all sick, I am not sure if I would worry too much. I doubt you need treatment without any symptoms to treat. Now if symptoms do recur, or tend to hit you later on, you might need treatment. That is something for your doctor to decide.
A positive anti-DNA test means = In a person with lupus symptoms, a positive test almost always means that lupus is present. But a positive anti-dsDNA does not automatically get you a lupus diagnosis, although it is one of the most specific auto-antibody tests for lupus. It can on rare occasions appear for no known reason/in the absence of lupus or due to other reasons. Most importantly, there must be at least symptoms/signs present for a lupus diagnosis or a positive kidney biopsy and/or skin biopsy.
Now your symptoms are only one occurance of joint swelling, and some rashes that sound allergy related, I don't know. Do you have a history of chronic fatigue and/or mouth sores?
Typically, four or more of the following criteria must be present to make a diagnosis of systemic lupus.
The “Eleven Criteria”
1.Malar rash: butterfly-shaped rash across cheeks and nose
2.Discoid (skin) rash: raised red patches
3.Photosensitivity: skin rash as result of unusual reaction to sunlight
4.Mouth or nose ulcers: usually painless
5.Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6.Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7.Neurologic disorder: seizures and/or psychosis
8.Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9.Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10.Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11.Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.
The rashes were itchy the first time, and non-itchy after. They went away pretty quickly. I threw away the food packet already and the rashes hasn't returned.
I'm also very allergic to everything in the air as well as food. I'm practically allergic to all the food I eat except seafood - according to the allergy tests (skin tests and blood tests) I took over the years with multiple allergists.
I don't have any organ or kidney problems, I don't have any medical problems except for allergies. If the "Ro" that you're talking about is the same as SS-A test, mine has been negative. All the other tests that my Rheumatologist did came back negative except for dsDNA.
I don't have a history of chronic fatigue or mouth sores at all.
I have none of the 11 symptoms you listed, maybe I have one since my dsDNA is positive. That's why I'm so puzzled. The only thing that is consistent is that I always don't get enough sleep, I'm always stressed out, and I have bad allergies.
I have no symptoms, so there is nothing to treat, but I don't know what I have or I have nothing at all. Can a healthy person have a positive dsDNA? My PCP said that there's something wrong with me, and she wants me to go see her husband who's a new Rheumy, I didn't go see him, I went to another one instead. Even after all the tests and 2 visits to the Rheumatologist within a 5-month period, all negative test results except for dsDNA, my PCP still insists that there's something wrong with me. So what do I have? What's wrong with me?
The following user gives a hug of support to seaworld:
I can't even begin to imagine a person having Lupus without any symptoms present. Until I started treatment not too long back, my life was 13 years of severe fatigue, being bed ridden (either sleeping or just laying in bed too sick to do anything else) with chronic muscle/joint pain. And I believe anyone with an AI disease is going to feel that way if they aren't being treated with immunosuppressive medications. Even at the start of the disease, I believe you are going to suffer from it to some degree. If I had to guess whether or not it was Lupus, I'd say no, but I'd think it's something your at risk of developing, but I cannot tell you whether or not you have Lupus, that is not my judgement call, it's not even a decision that should be made by your primary care doctor, you really need to ask your rhematologist what they think. Did they have an opinion about it after they tested you? My daughter is 15, her joints swell all the time, but her x-ray showed nothing, & her new doctor seems to think it's nothing. It happened to you once and they think it's Lupus. I don't get it. My daughter's last doc said she thought it was either RA or Lupus, and her new doctor didn't even put it into consideration. I'm sorry, I know you want a definitive answer, but I don't think that's necessarily possible. I was told I didn't have an autoimmune disease with a postive high ANA and very high RNP, but I did have it and proved it. No doctor is qualified at diagnosing Lupus but a rhematologist.
You might ask your doctor for a medication to help your stress/anxiety (like Lexapro, buspar or something).
My Rheumatologist is stumped, he doesn't know what I have. He's one of the best here as well as in the country. If he doesn't know, I don't know who would know, you know?! I don't like to take medications, so I'd rather take deep breaths, have massages, exercise, etc. to destress instead of taking a pill.
My Rheumatologist says that he wants to monitor me every 6 months to a year because my dsDNA is positive. The lab told him repeatedly after all the tests that it was a false positive since everything else was negative, but why would the result be in the teens if it's false positive. He doesn't know, I don't know either. I read that sometimes it means nothing at all, and sometimes it also means that it may take years for a diagnosis. There is no history of AI anywhere in my family.
There's another article that I read (can't find it anymore) that says that people with allergies sometimes have dsDNA in the range of less than 45 or something and that it's still normal. Mine is in the teens.
I'm just confused right now. This is just adding to my stress not knowing what I have or if I have anything at all with no symptoms to go by, but a positive dsDNA result.
Seaworld, I'd be confused, too. But from what you've written, I'd do just what your reputable rheumatologist recommends: have checkup every 6 months to one year. ALSO, read & know the common presenting symptoms of lupus, since anti-ds-DNA is considered very specific to SLE. Also, line up a reputable dermatopathologist* for any new rash you get. (* That's a dermatologist + pathologist, a dermie who does his own biopsy labwork instead of sending it out). My d/p did immunofluorescent stain tests, which can light up in a very specific way (lines) that are considered diagnostic of lupus. So, put name of top-flight skin specialist in your files.
THEN TRY TO RELAX. Yes, easier said than done, BUT you've been told solid reasons to watch but not be frantic. Because many present with life-threatening symptoms, it's a HUGE GIFT that you don't have any of those. I hope you post anytime you want to talk. We're always here for you. SO HANG IN THERE! Sending you my best wishes, Vee
I can honestly tell that it's stressing you out wondering if you have Lupus or not. I don't believe in false positives on these tests unless the results are pretty low. If it ends up disapearing, then yeah, okay, but if it's persistent, then no way. There are very few false positive results to anti ds-dna. The best thing you can do to confirm the results is to go take the test at a different lab than you normally go to and see if they confirm the anti ds-dna in your blood work too. I read that this can show up like 2 to 5 years before a person actually starts getting symptoms of Lupus, like an early warning sign. So just keep up the appts with your Rhemy. If years down the road, you still don't get sick, you'll probably going to be A-ok!
Sea, I know first hand your frustration. I had a positive ANA that continued to increase and so did my joint pain. My PCP sent me to a rheumatologist I also have a positive ds-dna. In time with treatment my ANA went to normal. It was suggested that when my thyroid was properly treated that brought my ANA to normal. My rheumatologist continues to test me regularly, but I do not have positive results for any of the more specific blood tests. My ds-dna is still positive. My rheumatologist suggested that because I have a family history of auto immune disease (my grandmother died from scleraderma) that may be why my ds-dna is always positive.
I do have several of the lupus symptoms and I am treated for those. Right now my official diagnosis is UCTD. This has been going on since 2003. Try not to stress and right now be glad your results are negative. You have a good doc, he can treat your symptoms or pain and keep an eye on your other blood work. That's a good thing.