Positive dsdna, then negative and my rheumatologist says I don't have lupus...

[guis]

I would like to hear some opinion from people who might went through the same thing as me because my diagnosis has been very confusing.

Back in July I had knee and wrist pain for a couple of weeks and I visited my GP, she run blood work and I was Ana positive and dsdna positive also, it was very low , range 0-9) mine was 13. She then said I had lupus and just wait for more symptoms to show up. I went a visited a rheumatologist which run the same Ana and DNA and the results were negative for both of them, then told me to just take plaquenil and go on with my life. Test were negative but we couldn't ignore the fist test.

I still had some doubts and got an appointment with another rheumatologist last week. He checked on all my blood work, ask me about any symptoms and he believes that I don't have lupus. To be honest, I don't have any other symptom than joint pain. This doctor told me it was due to I had a baby 1 year ago and maybe some overuse since I have 3 kids. I don't have any fatigue, sleep problems, hair loss, mouth ulcers... just the joint pain that lasted for like 2 months on and off back in July, He took plaquenil off and told me to just take turmeric and omega 3. He wants to test me 2 months later again to see if Ana and DNA continue negative which he tried to convince me I shouldn't be worried about it anymore.

I want to believe that I don't have lupus but at the same time I'm scared of not taking medication and getting checks up every couple of months.

Everything that I have read says that dsdna test is specific por lupus and can't be positive in a healthy person like the Ana test.

Any suggestions?

[misty14]

Hi GUIs

Interesting reading your post about diagnosis difficulties . I would have thought the anti dada test would stay at being positive as it's so specific to lupus. I don't have first hand experience of this as I've always been negative apart from the ANA. What strikes me is your body must be in a state of flux after you had your child for it to change like this. You've got the downside of too many opinions now because Rheumy 1 was happy for you to be on placquenil but Rheumy 2 not and I bet you don't know who to go with now?. What I'd do is keep a close eye on yourself because you might develop other symptoms between now and your re- test. That will be interesting. I'm glad the doctors are willing to do this. Also tell them if the joint pain worsens. These auto- immune illnesses do vary a lot over time. I hope someone on here has exact same experience of the tests as you as I'm sorry I don't but I hope I've been a bit helpful. Good luck for your re- tests. Keep us posted. X

[PMRpro]

Does this help:

labtestsonline.org/understa...

You can have negative tests and have lupus, but you can also have low titres in people without it:

"Anti-dsDNA antibodies are incredibly specific for SLE, with studies quoting nearly 100%, and are therefore used in the diagnosis of SLE. Higher titres of anti-dsDNA antibodies are more suggestive of SLE and lower titres can be found in people without the disease. In contrast to the high specificity, estimates of 25-85% have been observed for the sensitivity of anti-dsDNA in SLE. Therefore, presence of anti-dsDNA antibodies are suggestive of SLE, however an absence of the antibodies does not rule out the disease."

Your titre was low and you don't seem to have many symptoms that suggest lupus - so I suspect what this doctor is doing is waiting and watching to see if the low titre comes back. It is possible to have false positive tests as well as false negative results and since you have two tests with different results it is right to wait and see.

You aren't being ignored, the doctor is trying to save your body from being subjected to medications (which like all medications do have side effects) if you don't really need them. Having checks every few months for a while is far preferable to taking drugs you don't really need. And if you develop any other lupus symptoms I'm sure there won't be any question about you being treated.

[Hidden in reply to PMRpro]

I do understand how confusing it is but at the end of the day rheumatology is a very in exact area of science.

For example I was diagnosed with RA five years ago after very severe bilateral joint pain which lasted for a few years but was only excruciating for about a year, on and off. My rheumatoid factor was a weak positive of 24 (0-20) but the very specific RA marker, anti-CCP was negative. I was post bereavement (sudden death of both parents the previous years) and going through menopause. The rheumatologist said "things could change so keep an open mind" -and they did change a lot and I'm now rediagnosed by lip biopsy with primary Sjogren's.

I lost all my hair when I was nine and again after having my third baby and had many Lupus and Sjogrens symptoms from childhood. So I reckon hormones and stress do account for a great deal- but also Hydroxichloraquine and Methotrexate and steroids all skewed my autoantibodies so they came back negative when I was taking these medications.

My ANA is positive with a pattern usually associated more with Scleroderma and Polymyositis - although I don't have symptoms of these so far (thankfully). What I'm trying to say in a very round about way is that I agree with PMRpro - if you don't have the symptoms then best not to take the drugs - but to have a close eye kept on you is good.

[Paul_Howard Partner LUPUS UK]

Hi guis ,

You've had some really helpful replies from other members of the community, which I am very pleased to see.

As the others have said, the diagnosis of lupus can be difficult and if you have fluctuating test results and joint pains are currently your only symptom then it may not be sufficient to confirm a particular condition.

dsDNA is a fairly specific blood test for SLE and whilst it is not common for this test to be positive in those who do not have lupus, it is not impossible.

If you experience any other new symptoms then please do go back to your doctor.

If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[Freckle1000]

Hi Guis,

This was back in the days when dinosaurs ruled the earth, but my mother tested positive for Lupus 'once' - and only once back in the 80's. (Don't know what her ANA's and anti-DNA's where) But the specialist (who diagnosed me with SLE at the time) essentially told her to go home and forget about it. (possibly a more cautious approach was required) - but she lucked out and never had a problem again. I would describe her as having an extremely healthy life. She's now 76 - has a bit of osteo arthritis - a condition not related to Lupus.

I'd agree with the earlier responses. Some better safe than sorry monitoring for a while.

[sflynn84]

Hi Guis,

I am going through a similar situation right now. Six months postpartum, when I would get up at night with my baby, I noticed a strange stiffness and joint pain in my hands. I thought it wasn't normal so I went to my GP and my ANA was 1:160. She referred me to a rheumy who ran more bloodwork and my anti-dsdna came back at 10 (anything above 9 is considered positive) and my C4 is low. Unfortunately my lab sent the results to me and I am waiting to follow up with my rheumy. I am having no other symptoms. I decided to stop breastfeeding and see if that helps. I am wondering how you are feeling now? I am concerned about starting plaquenil if I don't need it.

[guis in reply to sflynn84]

Hi Sflynn84,

I am doing very good now. I had the test 2 months later and everything was negative one more time, the rheumatologist told me I shouldn't worry anymore and I could have a normal life. Since then, I still had some pain in my joints but he told me it could be all part of the pregnancy and hormones. It has been improving with time. I didn't stop breastfeeding and I was able to do it for 20 months, I stopped last month and started taking turmeric supplements to see if my pain finally stops. I have been in the sun all summer and started to workout.

I visited another GP for some other reason and asked him about my situation, he said that lab works sometimes can be wrong, if I got 2 negative ones after a slightly positive one, I should move on and forget about it.

Hang in there and ask your doctor to test you again. Since you stopped breastfeeding already, it might help you to feel better if the pain is caused by hormones making your joints hurting. How are all your bloodwork test? Besides your wrist pain, do you have any other "symptom"? Mine were always very good, and I was not sensitive to the sun, neither had any type of rash. My hair was falling out but again, that's normal for postpartum..

Hope everything goes well and next test negative!! 😊

[sflynn84 in reply to guis]

I am so glad to hear you are doing well! I have had no other symptoms than the joint pain in my hands. I am not sensitive to the sun, no rashes, fatigue, etc. My anti dsdna came back at a 10 (range 0-9), so just positive. It is frightening to hear people saying you may have lupus. Especially since I feel good. It was disheartening to stop breastfeeding but I felt that I need to get my body back to it's normal state.

[sunrise]

I'd be pleased not to take the medication, I don't take it (with Consultants blessing) and I DO have lupus. Medication is not a cure all and it has terrible side effects. Turmeric is show in the literature to be very effective against inflammation - amazing and wonderful to hear a doctor recommending it....