Hi all im a new member. I hope you can help!?I have tested positive for ANA 1/640 and just had a positive result for anti ds dna says 16iu(high) ...what does this mean?
I am not due to see a rheumatologist until December, and GP has no understanding of how the results are read or their meaning!
I know this means I am probably expecting a lupus diagnosis.
However, I am confused about the range of anti dsdna? It says high in the results but when researching the ranges are different it was a Elisa test if that means anything?
My kidney function is low for my age suggest ckd2 and creatine levels are up and peeing loads ...been ongoing for sometime.
I have had problems and symptoms for over 10 years and was diagnosed originally with psoriatic arthritis but this disease has never progressed as it was expected...I have no deformity to my joints dispite chronic pain in many. I have a mild malar rash and slow transit bowel with other digestive problems. I am constantly feeling i am coming down with a flu that never comes and aching and terribly tired and weak all the time.
I'm not asking for you guys to diagnose me I am just hoping someone might have more experience in understanding the interpretation of anti dsdna test ?
I hope you can help?
Thank you all kindly in advance and best wishes to you
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Cushties
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Unfortunately I was told every hospital has different scales for dsdna test. I was positive in one hospital but my new hospital said the reading meant little to them. The thing is your positive so now a Rheumatologist should coordinate your care and diagnose you. Keep photos and a diary to take to your visit as blood results can help but it's your symptoms that should bring a definitive diagnosis. I am negative on all bloods except the first time I had a positive dsdna. Now its negative too as the hydroxychloroquine tablets are dampening down my immune system effectively. Even if your bloods go negative you can still feel awful. I am exhausted every day and have been for 10 years. Just rest well every day when you need it. Your body is telling you to stop. Your gp or rheumy can help with medication for joint pain once you get a diagnosis. Keep going, don't give up looking for a diagnosis. Took me over 20 years to get mine! Take care. Xx
Hi, this is what came up when I googled "A ratio of 1:640 or greater indicates a high possibility of autoimmune disorder, but results will need to be analyzed by a doctor and additional tests performed to draw a conclusion. However, a positive result doesn't always mean that you have an autoimmune disease."
My gp admitted she knew very little about lupus and for some time was treating me for undiagnosed RA and prescribing a drug that didn't help and landed me in hospital with an ulcer. I needed surgery. Went back to my gp once discharged and a locum sent me for blood tests that came back psotive for mild SLE. ANA was there in the results but thats as much as I knew.
anti dsdna test - "The anti-dsDNA test helps diagnose lupus when you have lupus signs and symptoms and a positive ANA (antinuclear antibody) test."
Your rheumatologist will tell you more in december. If you're anxious ask your gp if they will get an earlier follow up maybe. Sorry I'm not much use...
I agree with dg70 - normal ranges do vary between laboratories. Does your result actually provide the normal range? Once you get treatment, usually hydroxychloroquine, the levels often normalise, although you may still not feel brilliant sadly. Mine was 75 when I was diagnosed 13 years ago, but it is now in the normal range.
Your flu like symptoms, plus fatigue and joint/muscle pain sound very like mine. Somebody said to me yesterday ‘you have to listen to your body, even if you don’t like what it’s telling you’.
Do you have the NHS app on your phone? I know on mine, I can see the results of blood tests my GP has sent me for and they have the corresponding range next to them. It might have more info on which test they did. Like other people have said, ranges can vary a lot and the internet is very confusing regarding this.
The good news is, December isn't that long away, as some areas the wait can be many months longer (mine was 7 months from GP to Rheumatology). I know it can feel like an eternity when you're feeling unwell and worrying about it, though. I had positive ANA (reported to me as negative for some unknown reason), but negative for the few specific auto antibodies they did test for. One of the conditions I've wondered I might have is Psoriatic Arthritis, as well as Lupus, so it's interesting that's the diagnosis you were given 10 years ago. I do have psoriasis on my scalp and occasionally elsewhere, but also CKD 3. I have a few other things in mind too, but it's a difficult process when the blood tests don't show anything obvious. Hopefully the fact that yours are showing more will mean you will get some clearer and quicker answers.
An ANA test is very generic as it is a top level test that counts all antibodies. Below this there are more specific tests to drill down to determine exactly which antibodies are the problem. dsDNA is one such test that is associated with SLE. You say that the test was Elisa -- this is a test that is automated so it is much quicker than the manual test called Crithidia. Both of these have widely differing scales. The normal range for Elisa is between 0 - 9.9 IU/ml. At 16 you are indeed higher than the normal max of 9.9 but relatively this is still on the low side. e.g. At one stage my wife was over 600 on the Elisa scale -- she was very ill indeed at this level, it has taken over 2 years to gradually come down, whilst taking hydroxychloroquine. Thankfully, she is now in the normal range.
Like you our GP openly admits that the interpretation of dsDNA results is "above his pay range" and your rheumy is the person to give you the details in December, but don't worry too much at this stage. Our GP says that he has 7000 patients and only 3 of those have SLE. GPs cannot be experts in all aspects of medicine. Thankfully, we have a range of consultants like rheumatologists who specialise in much more detail. Hope this helps and good luck.
Thank you beemanshrop that does put it in perspective for me...I really hope your wife is feeling alot better.?its a worrying illness..can I ask? Was she diagnosed with lupus nephritis? And do you recall her dsdna level when she was originally diagnosed with lupus?
When she was first diagnosed her dsDNA was over 1000 on the Crithidia scale which equates to about 600 on the Elisa scale. It is a long story at that time she was not able to eat any solids and could not swallow anything ( even her meds) hence she was admitted to a gastro ward -- after 6 weeks at the height of Covid) she was discharged with no diagnosis other than she had infections of her lungs (pleurisy), stomach (gastritis) and oesophagus. It was several weeks after her discharge when the dsDNA result came through which strongly suggested SLE. She was not diagnosed with lupus nephritis although she was referred to a nephrologist for several months who was particularly interested in dsDNA and urine tests. As it turned out there was not enough evidence to justify going to the biopsy stage. She was eventually discharged from the nephrologist and remains to this day under rhumatology. She is much better than she was but has SLE, RA and OA making walking very difficult (awaiting a knee job). Hope this helps.
She really has gone through it..my heart goes out to her I am glad to hear she is doing much better.Interestingly I have just been treated for gastritis , esophagitis and duodenitis ...diagnosed via endoscopy after longstanding issues kept me returning to a&e ...omeprazole and famotadine daily keeps at bay now...I can't take anti inflammatories anymore which helped with joints so just the cocodamol now...which isn't much help and not especially helpful with my slow yransit bowel...still under the colerectol surgeon for that. I am wondering if the gastritis etc is lupus related?
A diagnosis of lupus would be a bitter sweet for me as it would at least tie up all these ailments and problems I have as its seems as one thing resolves another starts...I feel people must think I am a hypochondriac.
Welcome to the LUPUS UK Community Forum, I hope you are finding it useful so far.
I have attached below a link to a page from our website regarding testing, diagnosis and treatment. There is a section about half way down the page, which discusses ANA results. Your rheumatologist will be able to answer any questions about this and your specific results in December.
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Newbie - Positive anti DS-DNA and high titre ANA
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Anti DNA UK Criteria
Can you lower a high anti ds dna count?
Help please!
