I have noticed that people diagnosed with SLE often have symptoms for a long time before it shows in their blood work. Also that symptoms persist for a long time after dsDNA levels return to the normal range. What observations do you have about this??
First. Thank you for this channel. This is very confusing. I have the symptoms of Lupus however, a Negative ANA But, a Positive DNA AB (DS) Criithidia, IFA and a DNA AB ( DS) Crithidia Titer of 1:20. My MD's MA said my tests were Normal. How can you have a Negative ANA but, positive for the others plus have symptoms.? So, frustrating!
I had a positive ANA on 2018, without symptoms. I have always had random rashes, brushed off as urticaria or fungal infection. I had been diagnosed with Hashimitos 10 years ago and symptoms appeared anytime I needed a dosage adjustment. In march 2022 I had new stressors and lack of sleep which resulted in headaches, bodyaches, extreme fatigue. Labs showed a 30 sed rate; and anti-dsdna of 12. Also had low iron, low hemoglobin and extremely high platelets. Primary care gave me iron and viy-D supplements. While I got a rheum appointment I made healthier lifestyle choices, lost 5 lbs and symptoms subsided. My rheum repeated some tests and only ‘positive’ marker was the anti-Dsdna. She told me I might be subclinical and wants to keep me in check. Am I destined to end up with Lupus?? This has been an eye opener and health-scare to make me take care of my body. 😰😰😰
Hi Am as immunologest enjoyed your immunoclinical Simplification and introduction for those complicated sciences to be understood by patients. Thank you for the explanation.
Hello! I’m so glad I found your channel. I had a positive ANA test but the only thing I see out of normal range is my ds DNA is a 1. I’m being referred to a rheumatologist but I’m so confused as to why. Any suggestions would be grateful.
Hello ! How are you I hope you're well, 😃I had my result and it threw this, the doctor who saw me said that I had tested negative for lupus I have 5.0 dsDNA Antibody Index and indeterminate dsDNA Antibody Result , I really liked your video but I don't understand much English but I realized that you know a lot about the topic , Yesterday I had another appointment with another doctor and to whom I explained that I have the same symptoms, she looked at my history and said that it was time to do the exam again because it was not really known if I had lupus or not
So confusing, I know! If your symptoms are persistent, it may be worthwhile to repeat the test as the second doc suggested. Sounds like the initial test result wasn’t particularly high but totally worth testing again if your symptoms haven’t resolved. Hang in there!
Ana is 1:640 and positive dsdna 1:40 where anything greater than 1:10 is positive. Also have malar rash that is spreading, sun rashes, joint pain, direct family members with RA, night sweats, fevers, neurological issues, raynauds, etc and rheumatologist says it’s probably a false positive you are perfectly healthy!!! Wth!!
This was outstanding! Thank you so much for this information. I am ready for my next appt on Wed, but this help clarify. Thanks again ... subscribed!!!
I'm currently being tested for lupus. I have body aches, severe fatigue, flu like symptoms, and many other symptoms. I had a negative ANA test but my anti ds DNA is positive and keeps increasing. It started at a 7, then 17, and now 21. I feel awful all the time.
I'm one of those highly unusual weirdos who has consistently positive anti-dsDNA with fluctuating positive and negative ANA. My ANA has only ever been 1:80 titer when positive. It's negative half the time. But my anti-dsDNA is ALWAYS positive and has been up to 25 (with negative being below 4, indeterminate 5-9, positive being above 10), even with a simultaneously negative ANA. -_- I meet more than enough criteria for lupus diagnosis and when my illness was active - I was VERY symptomatic - my rheumie says my symptoms are "textbook lupus". But it was a challenge to get a diagnosis because of the negative ANA.... lupus is so weird. Now that I am in remission, my anti-dsDNA is down to 12! :) and my symptoms are practically gone.
Hi, same here! I do have positive anti-dsDNA with negative ANA. It's really weird honestly.. how is that possible? It's unbelievable.. I don't even know what should I do for the next step :(
wow this is really interesting to hear.. I have had my ana come back always negative so my doctor would never do any other panels because of my results but recently I was able to see an internal medicine doctor and she listened to me.. I am scheduled to get a lot of ana panels tested and one of them is the DsDNA test because she believes i have lupus because of all the symptoms I have.. I'm happy that hopefully I would know what is goin on with my body.. thanks for sharing ur experience.. it is def encouraging🙏🏼🙏🏼
I’m the one who breaks all the rules 😂 I have negative ana with positieve antidsdna. Cutaneous lupus chillblains. And mostly neurological and atypical SLE symptoms. They now diagnosed me with lupus-like disease but they suspect the rare form neurolupus.
My ANA and other autoantibodies (incl. anti-ds-DNA) are positive and i have severe fatigue that my doctor keeps telling me is a figment of my imagination. When my ANAs are higher, the fatigue is worse, when they're lower, it's better. I'm sick of this bullshit. I need my doctors to tell me they don't know what's going on instead of making it a psychosomatic condition simply because their knowledge isn't there yet.
Anti-ds-DNA antibodies can also be elevated in drug-induced lupus when that DIL is caused by a TNF-alpha blocker such as Etanercept, etc. An RA patient on a TNF-alpha blocker could also independently develop SLE, so I think it would be important to figure out whether the blood test results and symptoms are caused by true SLE or DIL. Of course stopping the offending drug (e.g. etanercept) should resolve the symptoms if it is DIL but not if it is SLE.
Hello, thank you for making this video and all the other content you put out! I had my first rheumatology visit/consultation the beginning of last month. I am currently waiting to go back and review the blood work. I had a few Gray antibody results that were neither Green or Red. One of the antibodies that was tested was anti ds DNA, it came back the color gray saying negative. What caused it to be Gray? A few other antibodies that were Gray were MPO, Polymerase iii, Beta 2 Glycoproteins, Proteinase 3, and ANCA, and a few others. Again, thank you for this video.
I recently had an elevated DS DNA, the range though was “indeterminable” rather than negative or positive. It was drawn due to a rash on my foot that does not itch or hurt and has lasted and been growing for about a year. My PCP referred me to a rheumatologist to be screened for lupus. But I can’t get an appointment for about a month and it’s giving me a lot of anxiety because it wasn’t negative but it wasn’t positive and I can’t find any information about that.
I have a neg ANA and a very positive DS DNA and a positive SM antibody be DS DNA has gotten higher ever year for 13 years it's now 123 and it started at 15 that is done by the Elisa test and it is neg by the other way that starts with a Crithidia 13:47
My neurologist suspected lupus and ordered bloodwork. My ANA & dsANA were both positive. I went to the rheumatologist and they both came back negative. I’m waiting on another titer. Is it common to have lupus with fluctuating results on the blood panels?
Hi- I have been diagnosed with fibromyalgia. However- I have a positive ana 1:40 homogeneous pattern and 12 ds dna - retested few times the same ..is this still fibromyalgia? I have so many symptoms and question this? Any suggestions ?
This is so helpful. Thank you. I was tested in April with a ANA titer of 1:2560 and then a high dsdna (38). I am still waiting to get into a rheumatologist and feel lost and have gone from occasional joint pain to now everyday in small and large joints with fatigue and other symptoms. I've been told by family to also look into lyme disease. Would lyme disease influence these test results? Is a test for Lyme's warranted?
Tested twice, my 84 y.o. mother had a negative ANA abs, but poitive dsDNA abs 10 & 14 (above 9 was positive). She has many symptoms of autoimmune disease. How should she proceed, as the MD who had ordered it no longer can because of being in a different state
Hello! I have the rare thing you mentioned. Lol. I have a very high anti DS DNA of 468. But my ANA is negative. The only physical symptom I had was scleritis of eye. Which actually resolved eventually (I started taking good fish oil and that maybe helped). No one can figure out why I have this high anti DS DNA. They did full panel of many things (sjorjens, cbc, bmp auto immune) and all Negative. My DS dna is still High and I wonder about it. I see people who have it have higher risk of cardio problems which many of my family has had. Any thoughts?
Very useful and educational, thank you so much for posting it, I have negative double sDNA, nuclear speckled pattern and positive SSA (8) and positive ANA means SLE even other antibodies are all negative? Thanks 🙏
A +ANA does not necessarily mean lupus as it can be seen in any number of other conditions. Having a positive SSA should bring up the possibility of Sjogren’s Syndrome and warrants further discussion with your doc about if and how this may fit with your symptoms. 👍🏽
Is it possible to have result of 15 for anti dsDNA but the IFA come back negative and AC-0? All my other labs came back normal including my cbc, kidney and liver results. Rheumatologist started me on hydroxychloroquine which I haven’t started yet. The only reason why I got tested for ANA was for some hairloss and facial redness that is all over my face. (Not just in cheeks and nose)
I tested “high” on my labs the first time 1:640 and the second time 1:160 ANA both fine speckled patten .in the comments it says presence of DFS70 “which has a low prevalence of auto immune disease” but the rest of the tests came back negative.. in the Ana 12 plus profile.. I have symptoms but my doctors continue to tell me it’s a low possibility. Idk what to do?
I'm saving this but my Ana was positive and negative dsDNA and my other labs were negative but before then all my symptoms were in the red for lupus... Anything starting at 1:80 above should be ruled as lupus
my double-stranded DNA is 408. I just got the results today. The past two Mondays I have had the worst joint stiffness and pain where I could not use my hands and I am a paraplegic. Let me tell you it’s been fun times! We have been watching and waiting for 10 years thats When I had anti-and anti-antibodies because my daughter developed heart block in utero. I also have a positive ANA but no other real symptoms so they seem to not want to diagnose me. She gave me prednisone to take for a few days but I don’t want to take it. Do you recommend any good rheumatologist in the Boston area?
Was hoping for your opinion - negative ANA however positive DNA antibody (48). Other symptoms include swollen lymph nodes, urticaria, and excessive sweating. Is this likely lupus?
Hello doctor! Hope you're doing great! I'm 18 years old female. I've had moderate-to-severe headaches since past 4 years which worsened even more in corona. I've had headache problems since I was 8 years old but it was like once in 2-3 months but from past 3-4 years I get headaches for more than half of a month. I also have muscle aches and neck pain so I was told I have cervical problems. Apart from this I started to have severe rashes/hives on my whole body and breathing problems from last year. I've been to various neurologists and dermatologists but no treatment worked for me completely. I also have some other problems like hair fall, weight loss , irregular periods. Recently I've gotten my dsdna test done on the recommendation of a doctor and it came positive and he says it's on the borderline but will need a long term treatment. Other blood tests and kidney related tests all came normal. So please tell me what it means exactly and if I need to have some other tests done? Please reply!🙏
I recently tested positive Teter was 1:320 Pattern was nuclear dense fine speckled. I heard that my pattern means I do not have a autoimmune disease? Is that accurate?
I am an 18 year old female. My ANA came back positive. My ANA titer is 1:360 and the pattern is speckled. My ds DNA ab test also came back positive. My DNA titer is 1:160. My local rheumatologist can't take me until April of next year. I am always so tired. I have joint pain, especially in my knees when I drive. My hair thinned out everywhere and it's embarrassing to wear it down because you can see my scalp from every angle. I am worried because I start school soon and I was so exhausted last semester.
I'm so sorry to hear you aren't feeling well and you've been told you have to wait so long to see a rheumatologist. Given your labs and symptoms I definitely think you deserve to see a Rheumatologist. Here are a few things I would suggest to try to get in to see the doctor sooner - 1. See if the Rheumatologist has a cancellation list and if they do, get on it. 2. Keep in close touch with your primary care doctor - can they call the Rheumatologist to try to get you in sooner? Can they call them to ask if and what treatments they could go ahead and start? 3. If the issue is related to limited rheumatologists options because of your insurance, reach out to the insurance company and investigate how they can cover an appointment to see an out-of-network provider because the wait time for the in-network provider is beyond reasonable. **also, while you work on this, I recommend making sure your initial labs included blood & urine tests looking at your kidneys, because as I said in the video, a +dsDNA can be associated with kidney disease Hang in there!
Is a DSDNA level of 17 high enough to worry about. My daughters Rheumatologist says she might have pSA. She is on Leflunamide. My other daughter has pSa and is on Humira. BTW, I have had a positive ANA but no elevations in any specific antibodies.
My ana and double strand was positive in 2023 now my ana is negative and my double stand is positive my Rheumatologist still does know what's going on with me
Hi Dr. Ortiz I love and appreciate what you do to help others ! I am from Ohio and we do not have many Rheumatologists here. I have a spindle pattern and I am not sure even what that means. Do you do telehealth?
Hi I just recently got a positive ANA, and a 5H intermittent DS DNA test and a 1:40 ANA titer. I was diagnosed with Graves at18, but all my thyroid levels came back normal. My doctor said it could be lupus. I do have extreme hair loss. Fatigue. Joint pain. I sunburn extremely easy and my EKG came back abnormal. She also diagnosed me with Rhenouds. Should I be worried? I was referred to a specialist, but i'm on a waiting list until February.
There definitely seems to be enough reason for you to have a full evaluation by a Rheumatologist as there is a lot to tease out. Being diagnosed with an autoimmune thyroid condition (even if it the thyroid levels are returning normal now) can lead someone to have "positive antibody results" that don't necessarily correlate with another disease. (ie - you can have antibodies associated with lupus in your blood tests, but not actually have lupus). The other part of this, however, is all your symptoms. Based on what you have shared, the symptoms could be from any number of conditions (thyroid or autoimmune). While you are waiting to see the rheumatologist things you can do now, would be to start keeping a symptom diary, taking note of things like your sleep, stress, movement, diet and menstrual cycle. You don't necessarily need to change things right away, just note these habits and see if there is any correlation with how you are feeling. Most specifically how your fatigue and joint pain are. This can help you find areas that do need to be addressed (ie is your joint pain worse if/when you don't sleep well? Is your fatigue worse during the premenstrual phase?) Hang in there! (fyi - there are a few rheumatologists who do telemedicine visits across the US and even international (I do not) if you would like to have, at least a telemedicine visit sooner than February. You can message me via my website, insta or FB for more info)
We are lost as to what is going on with me. I have a positive anti DS dna of 13. And. 11. Positive Ana with homogeneous pattern. But all my inflammatory markers are negative. Consistent high absolute lymph’s. I get rashes. But not necessarily from exposure. I’ve left all the doctors scratching their heads
Hey doctor! love your channel. Question. Been having severe full body hives for 1.5 months... much better now however. 99% improvement. Allergist labs revealed one + ANA, ONE negative ANA [1:80] and positive DSDNA [48]. I think I saw 1:256 ANA ON labs. Never had symptoms. No fatigue. No body aches. No fever. Ever. Walk outside in sun every other day for an hour. No issues. Sometimes small hives later but getting better. Lift weights for 2 hours 3 times a week or so. Never had body aches. Nothing. Feel fine. Confused. Please help! Does "48"+ DSDNA AND ONE POSITIVE ANA MEANS LUPUS NEPHRITIS FOR SURE???!!
Oh goodness, no! There is no lab test that means lupus nephritis for sure! It sounds like, overall you are doing well. While in the midst of urticaria (hives) it is not uncommon for autoantibody blood tests to come back positive. What the results mean really depends on how you are doing and it sounds like you are doing well. I'm sure your doc will continue to work with you and watch how you are doing, looking out for any changes, but rest assured, there is no autoantibody blood test that definitively diagnoses lupus nephritis! Hope this helps!
@@ConnectedRheumatology thank you so much for taking the time to answer. Went to rheumatologist again and dadgum it postive ana/ dsdna again but "43" this time. Kidney functions normal all of them. Hives 100% been gone for weeks now thank Jesus. But still freakin. Dr wants to "watch me". I read that dsdna tests especially are "often" false positives due to complexity and possible contamination etc. Not sure if true. Also rheumatologist said that in his 29 years of experience he had to fire a lab in the past due to too many false positive dsdna results and lately "again" hes getting tons of positive dsdna results. Hmmm. Wonder if other rheumatologist have same issues?! Asked him what percentage of patients who get postive dsdna end up developing lupus nephritis later on. He said less than 30%. That's not reassuring really :(
Wow, I had similar symptoms like you in 2016. I was itching so bad and had to go to urgent care twice and was treated with steroids both times until the itch stopped. My primary doctor ordered ANA test which was positive. Months later ordered it again together with the anti dna test and the result was 12 which is considered positive. I've had Kidney stones in the past. Makes me wonder what is going on. Should I be worried. I don't have any symptoms of anything
@@kayn2756 so apparently positive ana anti dna are often false positive especially when having hives. Also crithidia Lucille I think it's called is the most accurate anti DNA test out there. Doc said if positive..its 98% accurate that results are true. I wouldn't worry about it like at all as long as you don't have severe fatigue. Severe rashes when exposed to the sun. Also feel like you got the flu etc after being exposed to the sun. And severe whole body aches often that come and go. Also Kidney stones and hives have NOTHING to do with lupus. Separate issue from what I understand and what rheumatologist told me.
@@Bigpicturefinance I feel relief knowing the test is unreliable. The only problem is my grandma, my mother and sister all have RA. I'm hoping and praying I don't get it. I was referred to a rheumatologist, but I cancelled the appointment
If someone had 3 positive ANA's & 5 positive dsDNA's & the rheumatologists that they saw was convinced that the dsDNA's were all false positive & wanted to redo them & send them out to have them done by the crithidia method, which came back negative. I have researched this & have found that even with a negative dsDNA by crithidia method, you can't rule out lupus. What are your thoughts on this?
So if you have negative ANA but a positive dsdna of 1:80,there is nothing to worry about? 9 have been getting alot of interpretations with this and the symptoms are still the same. To the point that now I am no longer taking any medication because almost 6years of my life its been constant chest pain with my left almost not working, fatigue and headaches.
I’m a 39 yr old male, I lost partial vision , was diagnosed with vasculitis in left eye, dsDNA positive at 7, all blood work comes back great, chest scan negative, lab results don’t support sarcoidosis but not ruling out that or lupus. 60 mg of prednisone and down to 5mg.. eye proteins have improved so that’s good. Vision is still an issue in that eye and probably won’t go back to normal. But now he wants me on 15mg of methotrexate. I hate taking drugs and I wish they knew more about all this.
I’m glad the inflammation in your eye has improved and I totally sympathize with the frustration of the lack of a firm diagnosis. Having an isolated autoimmune problem in the eye (like vasculitis) can definitely be scary and confusing, but it is something that both ophthalmologists and rheumatologists see. The first and second step, which sounds like they did well, is control & stop the inflammation in the eye from getting worse and then figure out if the eye problem is part of a more systemic issue (like lupus or a systemic vasculitis). It sounds like, aside from the indeterminate dsDNA (which I’m sure they didn’t know what to do with and likely doesn’t tell us much) they didn’t find any inflammation or vasculitis any where else in your body, which is good. Prednisone is an excellent & powerful short term solution to get inflammation under control, but it is not a good long term solution. That’s where methotrexate comes in. As scary as methotrexate may sound, it is actually a much safer choice for long term treatment and control of the autoimmune vasculitis happening in your eye. Your doc’s goal is to keep your left eye vision where it is and prevent any other flares in that or the other eye, to protect your vision. Methotrexate can do that. Also, keep in mind, that just because you may not carry a firm diagnosis of lupus or RA, you could still benefit from all the non-medicinal interventions we (and others) talk about for autoimmunity. Avoiding pro-inflammatory foods, getting regular restful sleep, having a daily movement practice and an intentional stress management regimen can always be of benefit. There are no guarantees these interventions will enable you to be off all medication, but they can be wonderful supplements to whatever medication you may need and MAY enable you to get away with lower doses. (This is obviously very individual) Hope this helps and hang in there!
65 year old male here. I have tested high (value of 13) on the anti-dsdna test using Quest Diagnostics' standard ELISA test. On the Quest Diagnostics scale, anything over 9 is considered high. This has happened three times (always a value of 13) in one year. The only reason I was even given this test is because I tested positive on an ANA test when my PCP was doing some screening for what looks a lot like ankylosing spondylitis which runs in my family. The rheumatologist who commented on the high anti-dsdna results told me unequivocally that there is "absolutely no way" a male can have lupus - only females. My concern is that some of my symptoms fall somewhat outside the realm of AS and into that of lupus (swollen glands, nausea, high ds-dna, breathing difficulty, bloodshot eyes, tremendous fatigue that comes and goes.) What is my next logical move?
Find a new rheum. Males absolutely can have lupus (although women have it at a 9 times higher rate.) That said, your dsdna is barely positive and the symptoms you listed don't fulfill any of the criteria of a lupus diagnosis. Not saying you definitely don't have it, it just sounds very unlikely but I'm NAD
I should add that, after another round of testing, my anti-dsdna is now at 32, anti-ssdna is 193 and RNP/Sm is 88 units. There is now numbness in my hands and feet, and my joints (hands, knees, elbows) are sore every morning.
@@marclanglais7373 Ah, well that definitely adds more fuel to the fire. Anti-dsdna & anti-sm? Get to a rheum asap. If you have low complement or protein in your pee you hit the trifecta. Honestly tho, you almost certainly have lupus. Find a new rheum if your current doc doesn't see it.
My Anti-dsDNA is 2 and my titer is 1:80. It has been said that I have an autoimmune disorder and Lupus runs in my family. I cannot get any answers and every joint in my body hurts and I have a lot of other symptoms!!!!
A family member has end stage renal failure for a year and a half now and now just came back positive for double stranded dna and being referred to a rheumatologist. What does this mean?
It's hard to say - many lab results can be altered when someone has severe kidney failure and is on dialysis. I always like to remember that the reason the test was checked is always more important than the test result. It is very rare, although not impossible, for someone to develop lupus or have a recurrence of lupus once in kidney failure, so it is good they will see a rheumatologist. While waiting for the appointment, I would recommend your family member keeps a symptom diary (focusing on the symptom that lead to the doctor doing the blood test) and, if on dialysis, take note of if the symptoms change on dialysis days compared to non-dialysis days. This will be very helpful for the rheumatologist when they meet. Hope this helps!
I'm assuming you mean the ANA result was >1:640 and the dsDNA result was "indeterminate?" My first thought is the method done in the lab to measure the dsDNA antibody wasn't the gold standard method, using immunofluorescence (IF). When the dsDNA is done using IF, the result is given as a titer (like the ANA result) and is not reported as "indeterminate." It may be worth asking your doc if it can be repeated, using this other method.
My mother had lupus she had it at 15 years old died at 35 I’ve been suffering since I’ve been 36 . I have fibromyalgia psoriatic arthritis and Rheumatoid arthritis diabeties…… I feel like I might have more serious condition’s such as lupus. A doctor said I was on the line but couldn’t say I had or not ?
Hello dr, i am from Bangladesh... My mother suffering into fever about 2 month lots of test already done now her Triple antigen and Ana screening test is in borderline but Dsdna is positive about 64.67 iu/ ml, Ena profile Negative! Here the dr already checked a lot of investigation but they can't sure that this is lupus!!! Would you like to share some suggestion pls..
My anti dna test result was 12. Is this high enough to worry? I don't have any symptoms of anything. The doctor first did ANA test which was positive. The reason for this is because out of no where I started itching all over. So severe and my cervical lymph nodes were sticking out for months. I was treated with high doses of steroids until the itching resolved. One month on steroids and 3 months till the itching resolved. Then moths later, the doctor ordered another ANA TEST together with the anti dna test and the anti DNA result was 12. Should I be worried? I don't have any symptoms of anything
@Calming Soundscapes this doctor replied to one of my questions and said false positives are more common than not. She also said 12 was too low to worry. Some get their results in the 40s and still nothing to worry about. I was supposed to see a rheumatologist last September, I did a no call no show. I still have no symptoms of anything
I’m.a 58 year white male who is very active and was experiencing low back and groin pain. I went to an orthopedist who took X-rays. He felt the level of inflammation in my lumbar spine was indicative of an autoimmune disorder. The autoimmune panel came back negative for ANA but DsDNA was positive at 40. Other than the inflammation of the spine, I’ve had no symptoms of lupus in my life. Is it possible to have a false positive for dsDNA.
Absolutely. There is no autoantibody lab test that is perfect. We are taught that dsDNA is THE test for lupus, but in practice we certainly see positive results in individuals who have no other signs or symptoms of lupus. Of course, it always comes back to the person: what are symptoms? what does the doctor see? what do the other lab tests look like?...but yes, we do see false positive dsDNAs. Hope this helps!
@@ConnectedRheumatology thanks Doctor. I finally saw a rheumatologist and she confirmed that it is not lupus. She says some people naturally have elevated levels of dsDNA antibodies but don't have lupus. She ordered more blood tests and scans. She's leaning toward psoriatic arthritis which makes more sense since I've had psoriasis since I was a teen. Thanks for your videos. They are very informative. I'd like to suggest a video on how sometimes old white guys get autoimmune disorders.
@@dougsanger3025 I am not much younger than you and I just had a positive ANA and positive dsDNA of 50. I saw my rheumatologist who said its lupus whereas they had thought it could be psoriasis arthritis, I have had psoriasis for 25 years. I don't seem to have the typical lupus symptoms, I haven't had the facial rash, i don't have a problem with sunlight get a nice tan. I do have joint pains and tendon pains, brain fog and fatigue though. Going to try the hydroxychloroquine recommended to see if that helps.
@@marick791 the rheumatologist has ruled out psoriatic arthritis now. My recent blood tests showed a lot of inflammation but still no symptoms of lupus. That could be the result of my exercise regime. 2 HIIT classes, 3 weight training sessions and 10k steps a day. We’re going to repeat my blood tests every 3 months to monitor things.
@@dougsanger3025 I do a lot of cycling, around 2,500 miles a year, I think staying active helps! I have a follow up with the rheumatologist in 6 months so will see how I get on with the HCQ in the meantime.
Nothing that has been proven. A dsDNA of that level certainly deserves a second look, as I said in the video, but it is not 100% understood what the best thing to do for it is. If you are otherwise feeling ok and would like to try lifestyle or diet changes to see if they make a difference, I would recommend decreasing fast food and sugars and asking your doctor about adding a Vitamin D supplement and possibly and Omega-3. But sleep and stress management cannot be overlooked. Having good sleep hygiene, getting 6-8 hrs of restful sleep a night and an intentional stress management practice (investigate vagal nerve stimulation) also can make a huge difference. Again, none of these things have been PROVEN to decrease a dsDNA, but they are all low risk interventions that have been shown to have a positive impact on lupus patient's lives. Hope this helps!
I'm sorry to hear about your sister and I hope she's able to get in front of a Rheumatologist sooner rather than later to figure everything out. I can't be sure on the reference range of the particular test she had done, but based on how it was reported (4.92) I suspect the method it was tested was not what we consider the gold standard method, which is more reliable. (dsDNA tested using the ELISA method is often reported like this and dsDNA tested through immunofluoresence (IF) - the gold standard- is reported as a titer, ie 1:160, 1:1280, etc) What the positive result means 100% depends on what her symptoms are. Even though it is more closely tied to lupus than, say, the ANA, how the person feels, what their symptoms are and what their other labs show can change how we interpret the dsDNA result. A closer look with more specific testing will likely be done by a rheumatologist. Hope this helps!
My ANA test came back as a 13.1 and dsDNA test came back as a 9.8 but have plenty of symptoms that affect my quality of life very much. What conditions could this indicate i had a high mcv test and a low lymphocyte absolute test.
It's hard to know how to interpret your result without the reference range, but based on the way it is reported (one numeric value, as apposed to a titer, like 1:80, 1:160, etc) it was likely done using a lab method called ELISA. This is a fine screening test, but when trying to figure out the importance of a dsDNA, we usually rely on testing done with either Crithidia luciliae immunofluorescence or radioimmunoassay. Big, medical words, I know. But suffice to say, it may be worthwhile to talk with your doctor about 1) repeating the test using one of the above methods and 2) how how their suspicion is that it means anything based on your other labs and how you feel. Always remember, a lupus diagnosis isn't made with just one lab test. Good luck!
I must be one of the odd ones... when I was diagnosed with lupus last year my dsdna levels was I believe >700. Was put on hydroxycloriqune (🤣 please excuse the terrible spelling) which has reduced my flares and the pain I get in my joints when I do flare up. But since starting the meds my dsdna has increased to >1000!
I am low positive ANA on two different test and low positive on anti-dsdna. I have multiple symptoms of lupus but I got the UCTD diagnosis.
Everyone talks about “high” levels but nobody says what a high number is. My results showed my tier was 63 and the cutoff was
I have noticed that people diagnosed with SLE often have symptoms for a long time before it shows in their blood work. Also that symptoms persist for a long time after dsDNA levels return to the normal range. What observations do you have about this??
First. Thank you for this channel. This is very confusing. I have the symptoms of Lupus however, a Negative ANA But, a Positive DNA AB (DS) Criithidia, IFA and a DNA AB ( DS) Crithidia Titer of 1:20. My MD's MA said my tests were Normal. How can you have a Negative ANA but, positive for the others plus have symptoms.? So, frustrating!
I had a positive ANA on 2018, without symptoms. I have always had random rashes, brushed off as urticaria or fungal infection. I had been diagnosed with Hashimitos 10 years ago and symptoms appeared anytime I needed a dosage adjustment. In march 2022 I had new stressors and lack of sleep which resulted in headaches, bodyaches, extreme fatigue. Labs showed a 30 sed rate; and anti-dsdna of 12. Also had low iron, low hemoglobin and extremely high platelets. Primary care gave me iron and viy-D supplements. While I got a rheum appointment I made healthier lifestyle choices, lost 5 lbs and symptoms subsided. My rheum repeated some tests and only ‘positive’ marker was the anti-Dsdna. She told me I might be subclinical and wants to keep me in check. Am I destined to end up with Lupus?? This has been an eye opener and health-scare to make me take care of my body. 😰😰😰
Hi
Am as immunologest enjoyed your immunoclinical
Simplification and introduction for those complicated sciences to be understood by patients. Thank you for the explanation.
Hello! I’m so glad I found your channel. I had a positive ANA test but the only thing I see out of normal range is my ds DNA is a 1. I’m being referred to a rheumatologist but I’m so confused as to why. Any suggestions would be grateful.
Thank you for information Been living with this for 3 years.
I have been flaring severely for months... I might have to come to see you in Dallas with my labs
Hello ! How are you I hope you're well, 😃I had my result and it threw this, the doctor who saw me said that I had tested negative for lupus I have 5.0 dsDNA Antibody Index and indeterminate dsDNA Antibody Result , I really liked your video but I don't understand much English but I realized that you know a lot about the topic , Yesterday I had another appointment with another doctor and to whom I explained that I have the same symptoms, she looked at my history and said that it was time to do the exam again because it was not really known if I had lupus or not
So confusing, I know! If your symptoms are persistent, it may be worthwhile to repeat the test as the second doc suggested. Sounds like the initial test result wasn’t particularly high but totally worth testing again if your symptoms haven’t resolved. Hang in there!
Cómo estás que te dijo el doctor es lupus o no quisiera saber gracias
I am one of the anomalies that are ds-DNA positive and ANA negative.
Do you have lupus?
I do.
Ana is 1:640 and positive dsdna 1:40 where anything greater than 1:10 is positive. Also have malar rash that is spreading, sun rashes, joint pain, direct family members with RA, night sweats, fevers, neurological issues, raynauds, etc and rheumatologist says it’s probably a false positive you are perfectly healthy!!! Wth!!
Thank you for these videos, I have been finding them so approachable and educational.
Glad you like them! Let me know if there is any topic you'd like discussed!
This was outstanding! Thank you so much for this information. I am ready for my next appt on Wed, but this help clarify. Thanks again ... subscribed!!!
BTW I was diagnosed with lupus in 2013. Boy, I wish I found you sooner :)
You are amazing!!!
Thank you for the great information you share with all of us🙏🏼
Yay! Thank you so much for taking my request! ❤️
Of course!
I'm currently being tested for lupus. I have body aches, severe fatigue, flu like symptoms, and many other symptoms. I had a negative ANA test but my anti ds DNA is positive and keeps increasing. It started at a 7, then 17, and now 21. I feel awful all the time.
I keep feeling like something is going on in my kidneys but nothing has shown up on urine testing yet.
My ANA came back positive and RNP autoantibody came back positive. All other autoantibodies came back negative.
Same here. I don’t recall heading her speak on this.
That’s mixed connective tissue marker
I have a + ana 1:320. My dsdna was 21 on a scale 0-24. I'm a bit confused by the scale the lab used bc I'm not finding that range anywhere.
I'm one of those highly unusual weirdos who has consistently positive anti-dsDNA with fluctuating positive and negative ANA. My ANA has only ever been 1:80 titer when positive. It's negative half the time. But my anti-dsDNA is ALWAYS positive and has been up to 25 (with negative being below 4, indeterminate 5-9, positive being above 10), even with a simultaneously negative ANA. -_- I meet more than enough criteria for lupus diagnosis and when my illness was active - I was VERY symptomatic - my rheumie says my symptoms are "textbook lupus". But it was a challenge to get a diagnosis because of the negative ANA.... lupus is so weird. Now that I am in remission, my anti-dsDNA is down to 12! :) and my symptoms are practically gone.
Hi, same here! I do have positive anti-dsDNA with negative ANA. It's really weird honestly.. how is that possible? It's unbelievable.. I don't even know what should I do for the next step :(
@@rzkiashfrn If you have symptoms of lupus and especially if you have other labs that point to it, find a doctor who will listen to you.
wow this is really interesting to hear.. I have had my ana come back always negative so my doctor would never do any other panels because of my results but recently I was able to see an internal medicine doctor and she listened to me.. I am scheduled to get a lot of ana panels tested and one of them is the DsDNA test because she believes i have lupus because of all the symptoms I have.. I'm happy that hopefully I would know what is goin on with my body.. thanks for sharing ur experience.. it is def encouraging🙏🏼🙏🏼
@@renz-onde-rock4482 Good luck to you! I hope you get the answers you need to move forward with proper treatment so you can begin to feel better! 🙏
@@healwithlaurennicole thanks.. hope so too🙂
I’m the one who breaks all the rules 😂
I have negative ana with positieve antidsdna.
Cutaneous lupus chillblains.
And mostly neurological and atypical SLE symptoms.
They now diagnosed me with lupus-like disease but they suspect the rare form neurolupus.
I have positive dsdna and negative ana too and get chilbains too.
@@Funkybeans76did they diagnose you with lupus or other autoimmune disease?
@@MirtheVandenBerg Right now I am undifferentiated connective tissue disease but take hydroxychloroquine
Thank you for this video!!
My ANA and other autoantibodies (incl. anti-ds-DNA) are positive and i have severe fatigue that my doctor keeps telling me is a figment of my imagination. When my ANAs are higher, the fatigue is worse, when they're lower, it's better.
I'm sick of this bullshit. I need my doctors to tell me they don't know what's going on instead of making it a psychosomatic condition simply because their knowledge isn't there yet.
Get another doctor, I have slept all day, you need a referral to a specialist. I am under an amazing rhumatoglist and starting infusions next week.
Severe fatigue is my worst symptoms. The muscle and joint pain come and go. Fatigue is one the common symptoms of autoimmune disease. I don't get it.
Anti-ds-DNA antibodies can also be elevated in drug-induced lupus when that DIL is caused by a TNF-alpha blocker such as Etanercept, etc.
An RA patient on a TNF-alpha blocker could also independently develop SLE, so I think it would be important to figure out whether the blood test results and symptoms are caused by true SLE or DIL. Of course stopping the offending drug (e.g. etanercept) should resolve the symptoms if it is DIL but not if it is SLE.
Hello, thank you for making this video and all the other content you put out! I had my first rheumatology visit/consultation the beginning of last month. I am currently waiting to go back and review the blood work. I had a few Gray antibody results that were neither Green or Red. One of the antibodies that was tested was anti ds DNA, it came back the color gray saying negative. What caused it to be Gray? A few other antibodies that were Gray were MPO, Polymerase iii, Beta 2 Glycoproteins, Proteinase 3, and ANCA, and a few others. Again, thank you for this video.
I recently had an elevated DS DNA, the range though was “indeterminable” rather than negative or positive. It was drawn due to a rash on my foot that does not itch or hurt and has lasted and been growing for about a year. My PCP referred me to a rheumatologist to be screened for lupus. But I can’t get an appointment for about a month and it’s giving me a lot of anxiety because it wasn’t negative but it wasn’t positive and I can’t find any information about that.
i have the same issue with +ana test , idk exacy what does it mean ,
I have a neg ANA and a very positive DS DNA and a positive SM antibody be DS DNA has gotten higher ever year for 13 years it's now 123 and it started at 15 that is done by the Elisa test and it is neg by the other way that starts with a Crithidia 13:47
My neurologist suspected lupus and ordered bloodwork. My ANA & dsANA were both positive. I went to the rheumatologist and they both came back negative. I’m waiting on another titer. Is it common to have lupus with fluctuating results on the blood panels?
Can you please do a video talking about single stranded DNA and lupus?
Hi- I have been diagnosed with fibromyalgia. However- I have a positive ana 1:40 homogeneous pattern and 12 ds dna - retested few times the same
..is this still fibromyalgia? I have so many symptoms and question this? Any suggestions ?
I was that person with a negative ANA but a very high dsDNA of 9.0.
This is so helpful. Thank you. I was tested in April with a ANA titer of 1:2560 and then a high dsdna (38). I am still waiting to get into a rheumatologist and feel lost and have gone from occasional joint pain to now everyday in small and large joints with fatigue and other symptoms. I've been told by family to also look into lyme disease. Would lyme disease influence these test results? Is a test for Lyme's warranted?
Fasting is magical!
Everyone responds to diet changes differently so I"m glad you found something that works for you!
What fasting method you use? My ANA is negative and ds DNA is slightly elevated. I have hashimoto to.
Regards from Serbia
@@anastasijateodora3025how r u now?
I try that felt worse get weak lost muscle mass I had t o eat
Tested twice, my 84 y.o. mother had a negative ANA abs, but poitive dsDNA abs 10 & 14 (above 9 was positive).
She has many symptoms of autoimmune disease.
How should she proceed, as the MD who had ordered it no longer can because of being in a different state
Hello! I have the rare thing you mentioned. Lol. I have a very high anti DS DNA of 468. But my ANA is negative. The only physical symptom I had was scleritis of eye. Which actually resolved eventually (I started taking good fish oil and that maybe helped). No one can figure out why I have this high anti DS DNA. They did full panel of many things (sjorjens, cbc, bmp auto immune) and all
Negative. My DS dna is still
High and I wonder about it. I see people who have it have higher risk of cardio problems which many of my family has had. Any thoughts?
Very useful and educational, thank you so much for posting it, I have negative double sDNA, nuclear speckled pattern and positive SSA (8) and positive ANA means SLE even other antibodies are all negative? Thanks 🙏
A +ANA does not necessarily mean lupus as it can be seen in any number of other conditions. Having a positive SSA should bring up the possibility of Sjogren’s Syndrome and warrants further discussion with your doc about if and how this may fit with your symptoms. 👍🏽
Is it possible to have result of 15 for anti dsDNA but the IFA come back negative and AC-0? All my other labs came back normal including my cbc, kidney and liver results. Rheumatologist started me on hydroxychloroquine which I haven’t started yet. The only reason why I got tested for ANA was for some hairloss and facial redness that is all over my face. (Not just in cheeks and nose)
Same. How are you doing now?
I tested “high” on my labs the first time 1:640 and the second time 1:160 ANA both fine speckled patten .in the comments it says presence of DFS70 “which has a low prevalence of auto immune disease” but the rest of the tests came back negative.. in the Ana 12 plus profile.. I have symptoms but my doctors continue to tell me it’s a low possibility. Idk what to do?
I'm saving this but my Ana was positive and negative dsDNA and my other labs were negative but before then all my symptoms were in the red for lupus... Anything starting at 1:80 above should be ruled as lupus
my double-stranded DNA is 408. I just got the results today. The past two Mondays I have had the worst joint stiffness and pain where I could not use my hands and I am a paraplegic. Let me tell you it’s been fun times! We have been watching and waiting for 10 years thats When I had anti-and anti-antibodies because my daughter developed heart block in utero. I also have a positive ANA but no other real symptoms so they seem to not want to diagnose me. She gave me prednisone to take for a few days but I don’t want to take it. Do you recommend any good rheumatologist in the Boston area?
Was hoping for your opinion - negative ANA however positive DNA antibody (48). Other symptoms include swollen lymph nodes, urticaria, and excessive sweating. Is this likely lupus?
I have this to
Hello doctor! Hope you're doing great!
I'm 18 years old female. I've had moderate-to-severe headaches since past 4 years which worsened even more in corona. I've had headache problems since I was 8 years old but it was like once in 2-3 months but from past 3-4 years I get headaches for more than half of a month.
I also have muscle aches and neck pain so I was told I have cervical problems.
Apart from this I started to have severe rashes/hives on my whole body and breathing problems from last year. I've been to various neurologists and dermatologists but no treatment worked for me completely.
I also have some other problems like hair fall, weight loss , irregular periods.
Recently I've gotten my dsdna test done on the recommendation of a doctor and it came positive and he says it's on the borderline but will need a long term treatment. Other blood tests and kidney related tests all came normal.
So please tell me what it means exactly and if I need to have some other tests done?
Please reply!🙏
Thanks
My ANA is negative and DNA is 5. I have lots of joint and nerve pain. SHould I be concerned about Lupus?
I recently tested positive
Teter was 1:320
Pattern was nuclear dense fine speckled.
I heard that my pattern means I do not have a autoimmune disease? Is that accurate?
I am an 18 year old female. My ANA came back positive. My ANA titer is 1:360 and the pattern is speckled. My ds DNA ab test also came back positive. My DNA titer is 1:160. My local rheumatologist can't take me until April of next year. I am always so tired. I have joint pain, especially in my knees when I drive. My hair thinned out everywhere and it's embarrassing to wear it down because you can see my scalp from every angle. I am worried because I start school soon and I was so exhausted last semester.
I'm so sorry to hear you aren't feeling well and you've been told you have to wait so long to see a rheumatologist. Given your labs and symptoms I definitely think you deserve to see a Rheumatologist. Here are a few things I would suggest to try to get in to see the doctor sooner -
1. See if the Rheumatologist has a cancellation list and if they do, get on it.
2. Keep in close touch with your primary care doctor - can they call the Rheumatologist to try to get you in sooner? Can they call them to ask if and what treatments they could go ahead and start?
3. If the issue is related to limited rheumatologists options because of your insurance, reach out to the insurance company and investigate how they can cover an appointment to see an out-of-network provider because the wait time for the in-network provider is beyond reasonable.
**also, while you work on this, I recommend making sure your initial labs included blood & urine tests looking at your kidneys, because as I said in the video, a +dsDNA can be associated with kidney disease
Hang in there!
Is a DSDNA level of 17 high enough to worry about. My daughters Rheumatologist says she might have pSA. She is on Leflunamide. My other daughter has pSa and is on Humira. BTW, I have had a positive ANA but no elevations in any specific antibodies.
My ana and double strand was positive in 2023 now my ana is negative and my double stand is positive my Rheumatologist still does know what's going on with me
Hi .
What the difference between ANTI dsDNA IgM Vs ANTI dsDNA IgG?
I have 70 iu/ml in IgM (which says positive) but notmal result with IgG?
Tia
Hi Dr. Ortiz I love and appreciate what you do to help others ! I am from Ohio and we do not have many Rheumatologists here. I have a spindle pattern and I am not sure even what that means. Do you do telehealth?
I do but not in Ohio unfortunately!
Hi I just recently got a positive ANA, and a 5H intermittent DS DNA test and a 1:40 ANA titer. I was diagnosed with Graves at18, but all my thyroid levels came back normal. My doctor said it could be lupus. I do have extreme hair loss. Fatigue. Joint pain. I sunburn extremely easy and my EKG came back abnormal. She also diagnosed me with Rhenouds. Should I be worried? I was referred to a specialist, but i'm on a waiting list until February.
There definitely seems to be enough reason for you to have a full evaluation by a Rheumatologist as there is a lot to tease out. Being diagnosed with an autoimmune thyroid condition (even if it the thyroid levels are returning normal now) can lead someone to have "positive antibody results" that don't necessarily correlate with another disease. (ie - you can have antibodies associated with lupus in your blood tests, but not actually have lupus). The other part of this, however, is all your symptoms. Based on what you have shared, the symptoms could be from any number of conditions (thyroid or autoimmune). While you are waiting to see the rheumatologist things you can do now, would be to start keeping a symptom diary, taking note of things like your sleep, stress, movement, diet and menstrual cycle. You don't necessarily need to change things right away, just note these habits and see if there is any correlation with how you are feeling. Most specifically how your fatigue and joint pain are. This can help you find areas that do need to be addressed (ie is your joint pain worse if/when you don't sleep well? Is your fatigue worse during the premenstrual phase?) Hang in there! (fyi - there are a few rheumatologists who do telemedicine visits across the US and even international (I do not) if you would like to have, at least a telemedicine visit sooner than February. You can message me via my website, insta or FB for more info)
My ANA is negative, but ds DNA is slightly elevated. I have hashimoto to. I am 46 years male. Vit D 3 help me with hashimoto.
So I'm confused. Are there people that don't have the ds-dna?
Hi I have a question, what is the Ana with Rheumatoid panel negative?
Interested in Anti-Cofilin and Anti-RG2 antibodies....also anti-ccp....anti-sp1....psp....etc...novel Sjogren's Syndrome antibodies...and potential Lymphoma markers.
We are lost as to what is going on with me. I have a positive anti DS dna of 13. And. 11. Positive Ana with homogeneous pattern. But all my inflammatory markers are negative. Consistent high absolute lymph’s. I get rashes. But not necessarily from exposure. I’ve left all the doctors scratching their heads
An antibody and not my actual dna. Please help me understand if there is a difference and what the difference might be?
i have a very s trong posituve anti-ku outcome. What can i expect?
Hey doctor! love your channel. Question. Been having severe full body hives for 1.5 months... much better now however. 99% improvement.
Allergist labs revealed one + ANA, ONE negative ANA [1:80] and positive DSDNA [48]. I think I saw 1:256 ANA ON labs. Never had symptoms. No fatigue. No body aches. No fever. Ever.
Walk outside in sun every other day for an hour. No issues. Sometimes small hives later but getting better. Lift weights for 2 hours 3 times a week or so. Never had body aches. Nothing. Feel fine. Confused. Please help! Does "48"+ DSDNA AND ONE POSITIVE ANA MEANS LUPUS NEPHRITIS FOR SURE???!!
Oh goodness, no! There is no lab test that means lupus nephritis for sure! It sounds like, overall you are doing well. While in the midst of urticaria (hives) it is not uncommon for autoantibody blood tests to come back positive. What the results mean really depends on how you are doing and it sounds like you are doing well. I'm sure your doc will continue to work with you and watch how you are doing, looking out for any changes, but rest assured, there is no autoantibody blood test that definitively diagnoses lupus nephritis! Hope this helps!
@@ConnectedRheumatology thank you so much for taking the time to answer. Went to rheumatologist again and dadgum it postive ana/ dsdna again but "43" this time. Kidney functions normal all of them. Hives 100% been gone for weeks now thank Jesus. But still freakin. Dr wants to "watch me". I read that dsdna tests especially are "often" false positives due to complexity and possible contamination etc. Not sure if true. Also rheumatologist said that in his 29 years of experience he had to fire a lab in the past due to too many false positive dsdna results and lately "again" hes getting tons of positive dsdna results. Hmmm. Wonder if other rheumatologist have same issues?!
Asked him what percentage of patients who get postive dsdna end up developing lupus nephritis later on. He said less than 30%. That's not reassuring really :(
Wow, I had similar symptoms like you in 2016. I was itching so bad and had to go to urgent care twice and was treated with steroids both times until the itch stopped. My primary doctor ordered ANA test which was positive. Months later ordered it again together with the anti dna test and the result was 12 which is considered positive. I've had Kidney stones in the past. Makes me wonder what is going on. Should I be worried. I don't have any symptoms of anything
@@kayn2756 so apparently positive ana anti dna are often false positive especially when having hives. Also crithidia Lucille I think it's called is the most accurate anti DNA test out there. Doc said if positive..its 98% accurate that results are true. I wouldn't worry about it like at all as long as you don't have severe fatigue. Severe rashes when exposed to the sun. Also feel like you got the flu etc after being exposed to the sun. And severe whole body aches often that come and go. Also Kidney stones and hives have NOTHING to do with lupus. Separate issue from what I understand and what rheumatologist told me.
@@Bigpicturefinance I feel relief knowing the test is unreliable. The only problem is my grandma, my mother and sister all have RA. I'm hoping and praying I don't get it. I was referred to a rheumatologist, but I cancelled the appointment
If someone had 3 positive ANA's & 5 positive dsDNA's & the rheumatologists that they saw was convinced that the dsDNA's were all false positive & wanted to redo them & send them out to have them done by the crithidia method, which came back negative. I have researched this & have found that even with a negative dsDNA by crithidia method, you can't rule out lupus. What are your thoughts on this?
This is ridiculous they should have told you if it is lupus or not
mine is "equivocal" so not positive or negative. i feel horrendous. ana negative
how much was your anti dsdna count to be equivocal ?
What happens if your ANA, RNP are positive, but the dsDNA is within normal range?
My ANA is negative, and greater than 300 level dsdna.
Can DsDNA levels get raised from viruses like Covid or similar sicknesses?
What does it mean if I had an ANA test done and then the lab also did an ENA screening test?
So if you have negative ANA but a positive dsdna of 1:80,there is nothing to worry about? 9 have been getting alot of interpretations with this and the symptoms are still the same. To the point that now I am no longer taking any medication because almost 6years of my life its been constant chest pain with my left almost not working, fatigue and headaches.
I' m negative ANA but 10 dsdna
I’m a 39 yr old male, I lost partial vision , was diagnosed with vasculitis in left eye, dsDNA positive at 7, all blood work comes back great, chest scan negative, lab results don’t support sarcoidosis but not ruling out that or lupus. 60 mg of prednisone and down to 5mg.. eye proteins have improved so that’s good. Vision is still an issue in that eye and probably won’t go back to normal. But now he wants me on 15mg of methotrexate. I hate taking drugs and I wish they knew more about all this.
I’m glad the inflammation in your eye has improved and I totally sympathize with the frustration of the lack of a firm diagnosis. Having an isolated autoimmune problem in the eye (like vasculitis) can definitely be scary and confusing, but it is something that both ophthalmologists and rheumatologists see. The first and second step, which sounds like they did well, is control & stop the inflammation in the eye from getting worse and then figure out if the eye problem is part of a more systemic issue (like lupus or a systemic vasculitis). It sounds like, aside from the indeterminate dsDNA (which I’m sure they didn’t know what to do with and likely doesn’t tell us much) they didn’t find any inflammation or vasculitis any where else in your body, which is good. Prednisone is an excellent & powerful short term solution to get inflammation under control, but it is not a good long term solution. That’s where methotrexate comes in. As scary as methotrexate may sound, it is actually a much safer choice for long term treatment and control of the autoimmune vasculitis happening in your eye. Your doc’s goal is to keep your left eye vision where it is and prevent any other flares in that or the other eye, to protect your vision. Methotrexate can do that. Also, keep in mind, that just because you may not carry a firm diagnosis of lupus or RA, you could still benefit from all the non-medicinal interventions we (and others) talk about for autoimmunity. Avoiding pro-inflammatory foods, getting regular restful sleep, having a daily movement practice and an intentional stress management regimen can always be of benefit. There are no guarantees these interventions will enable you to be off all medication, but they can be wonderful supplements to whatever medication you may need and MAY enable you to get away with lower doses. (This is obviously very individual) Hope this helps and hang in there!
@@ConnectedRheumatology Just got an updated test … I’m at 24 now SDNA
65 year old male here. I have tested high (value of 13) on the anti-dsdna test using Quest Diagnostics' standard ELISA test. On the Quest Diagnostics scale, anything over 9 is considered high. This has happened three times (always a value of 13) in one year. The only reason I was even given this test is because I tested positive on an ANA test when my PCP was doing some screening for what looks a lot like ankylosing spondylitis which runs in my family. The rheumatologist who commented on the high anti-dsdna results told me unequivocally that there is "absolutely no way" a male can have lupus - only females. My concern is that some of my symptoms fall somewhat outside the realm of AS and into that of lupus (swollen glands, nausea, high ds-dna, breathing difficulty, bloodshot eyes, tremendous fatigue that comes and goes.) What is my next logical move?
Find a new rheum. Males absolutely can have lupus (although women have it at a 9 times higher rate.) That said, your dsdna is barely positive and the symptoms you listed don't fulfill any of the criteria of a lupus diagnosis. Not saying you definitely don't have it, it just sounds very unlikely but I'm NAD
I should add that, after another round of testing, my anti-dsdna is now at 32, anti-ssdna is 193 and RNP/Sm is 88 units. There is now numbness in my hands and feet, and my joints (hands, knees, elbows) are sore every morning.
@@marclanglais7373 Ah, well that definitely adds more fuel to the fire. Anti-dsdna & anti-sm? Get to a rheum asap. If you have low complement or protein in your pee you hit the trifecta. Honestly tho, you almost certainly have lupus. Find a new rheum if your current doc doesn't see it.
My Anti-dsDNA is 2 and my titer is 1:80. It has been said that I have an autoimmune disorder and Lupus runs in my family. I cannot get any answers and every joint in my body hurts and I have a lot of other symptoms!!!!
Ugh - this is so frustrating. When the labs aren't particularly helpful, it can take even longer to get an answers. Hang in there!
@@ConnectedRheumatology I see a Rheumatologist in November!!
Omg same for me !!! Did you ever finally get diagnosed for lupus ?
A family member has end stage renal failure for a year and a half now and now just came back positive for double stranded dna and being referred to a rheumatologist. What does this mean?
It's hard to say - many lab results can be altered when someone has severe kidney failure and is on dialysis. I always like to remember that the reason the test was checked is always more important than the test result. It is very rare, although not impossible, for someone to develop lupus or have a recurrence of lupus once in kidney failure, so it is good they will see a rheumatologist. While waiting for the appointment, I would recommend your family member keeps a symptom diary (focusing on the symptom that lead to the doctor doing the blood test) and, if on dialysis, take note of if the symptoms change on dialysis days compared to non-dialysis days. This will be very helpful for the rheumatologist when they meet. Hope this helps!
I have a question: What does it mean when the DsDNA antibody is indeterminate with a >1:640 ANA titer? Thank you
I'm assuming you mean the ANA result was >1:640 and the dsDNA result was "indeterminate?" My first thought is the method done in the lab to measure the dsDNA antibody wasn't the gold standard method, using immunofluorescence (IF). When the dsDNA is done using IF, the result is given as a titer (like the ANA result) and is not reported as "indeterminate." It may be worth asking your doc if it can be repeated, using this other method.
My mother had lupus she had it at 15 years old died at 35 I’ve been suffering since I’ve been 36 . I have fibromyalgia psoriatic arthritis and Rheumatoid arthritis diabeties…… I feel like I might have more serious condition’s such as lupus. A doctor said I was on the line but couldn’t say I had or not ?
Hello dr, i am from Bangladesh... My mother suffering into fever about 2 month lots of test already done now her Triple antigen and Ana screening test is in borderline but Dsdna is positive about 64.67 iu/ ml, Ena profile Negative! Here the dr already checked a lot of investigation but they can't sure that this is lupus!!! Would you like to share some suggestion pls..
If a person took plaquenil for years and had the syndrome from it what do you do
hello i just had lads and the ANA is NEG but the ANTI DNA is POS, been having chest pains for 2 years now :(
Hello mam. I'm SLE pt.. My ANA 4. 040. Ds dna 18. 5. I'm HD patient. This lupus???
My anti dna test result was 12. Is this high enough to worry? I don't have any symptoms of anything. The doctor first did ANA test which was positive. The reason for this is because out of no where I started itching all over. So severe and my cervical lymph nodes were sticking out for months. I was treated with high doses of steroids until the itching resolved. One month on steroids and 3 months till the itching resolved. Then moths later, the doctor ordered another ANA TEST together with the anti dna test and the anti DNA result was 12. Should I be worried? I don't have any symptoms of anything
@Calming Soundscapes this doctor replied to one of my questions and said false positives are more common than not. She also said 12 was too low to worry. Some get their results in the 40s and still nothing to worry about. I was supposed to see a rheumatologist last September, I did a no call no show. I still have no symptoms of anything
@Calming Soundscapes thanks and good luck to you too
I’m.a 58 year white male who is very active and was experiencing low back and groin pain. I went to an orthopedist who took X-rays. He felt the level of inflammation in my lumbar spine was indicative of an autoimmune disorder. The autoimmune panel came back negative for ANA but DsDNA was positive at 40. Other than the inflammation of the spine, I’ve had no symptoms of lupus in my life. Is it possible to have a false positive for dsDNA.
Absolutely. There is no autoantibody lab test that is perfect. We are taught that dsDNA is THE test for lupus, but in practice we certainly see positive results in individuals who have no other signs or symptoms of lupus. Of course, it always comes back to the person: what are symptoms? what does the doctor see? what do the other lab tests look like?...but yes, we do see false positive dsDNAs. Hope this helps!
@@ConnectedRheumatology thanks Doctor. I finally saw a rheumatologist and she confirmed that it is not lupus. She says some people naturally have elevated levels of dsDNA antibodies but don't have lupus. She ordered more blood tests and scans. She's leaning toward psoriatic arthritis which makes more sense since I've had psoriasis since I was a teen. Thanks for your videos. They are very informative. I'd like to suggest a video on how sometimes old white guys get autoimmune disorders.
@@dougsanger3025 I am not much younger than you and I just had a positive ANA and positive dsDNA of 50. I saw my rheumatologist who said its lupus whereas they had thought it could be psoriasis arthritis, I have had psoriasis for 25 years. I don't seem to have the typical lupus symptoms, I haven't had the facial rash, i don't have a problem with sunlight get a nice tan. I do have joint pains and tendon pains, brain fog and fatigue though. Going to try the hydroxychloroquine recommended to see if that helps.
@@marick791 the rheumatologist has ruled out psoriatic arthritis now. My recent blood tests showed a lot of inflammation but still no symptoms of lupus. That could be the result of my exercise regime. 2 HIIT classes, 3 weight training sessions and 10k steps a day. We’re going to repeat my blood tests every 3 months to monitor things.
@@dougsanger3025 I do a lot of cycling, around 2,500 miles a year, I think staying active helps! I have a follow up with the rheumatologist in 6 months so will see how I get on with the HCQ in the meantime.
Would like to schedule a tele health visit.
I have lupus from past 7 years and my anti dsdna is 800.. are there any super foods to lower anti dsna and reverse lupus..
Nothing that has been proven. A dsDNA of that level certainly deserves a second look, as I said in the video, but it is not 100% understood what the best thing to do for it is. If you are otherwise feeling ok and would like to try lifestyle or diet changes to see if they make a difference, I would recommend decreasing fast food and sugars and asking your doctor about adding a Vitamin D supplement and possibly and Omega-3. But sleep and stress management cannot be overlooked. Having good sleep hygiene, getting 6-8 hrs of restful sleep a night and an intentional stress management practice (investigate vagal nerve stimulation) also can make a huge difference. Again, none of these things have been PROVEN to decrease a dsDNA, but they are all low risk interventions that have been shown to have a positive impact on lupus patient's lives. Hope this helps!
@@ConnectedRheumatology thank u so much for your reply
My younger sisters Anti ds DNA RESULT 4.92...What about you tel me plz???
I'm sorry to hear about your sister and I hope she's able to get in front of a Rheumatologist sooner rather than later to figure everything out. I can't be sure on the reference range of the particular test she had done, but based on how it was reported (4.92) I suspect the method it was tested was not what we consider the gold standard method, which is more reliable. (dsDNA tested using the ELISA method is often reported like this and dsDNA tested through immunofluoresence (IF) - the gold standard- is reported as a titer, ie 1:160, 1:1280, etc) What the positive result means 100% depends on what her symptoms are. Even though it is more closely tied to lupus than, say, the ANA, how the person feels, what their symptoms are and what their other labs show can change how we interpret the dsDNA result. A closer look with more specific testing will likely be done by a rheumatologist. Hope this helps!
My last test showed ANA neg and dsDNA is positive …..
Same to me. I have Hashimoto to.
Histone AB iGg
Cpp on AR.
My ANA test came back as a 13.1 and dsDNA test came back as a 9.8 but have plenty of symptoms that affect my quality of life very much. What conditions could this indicate i had a high mcv test and a low lymphocyte absolute test.
Mam i have Antibody DSDNA is 2.68 is it normal
It's hard to know how to interpret your result without the reference range, but based on the way it is reported (one numeric value, as apposed to a titer, like 1:80, 1:160, etc) it was likely done using a lab method called ELISA. This is a fine screening test, but when trying to figure out the importance of a dsDNA, we usually rely on testing done with either Crithidia luciliae immunofluorescence or radioimmunoassay. Big, medical words, I know. But suffice to say, it may be worthwhile to talk with your doctor about 1) repeating the test using one of the above methods and 2) how how their suspicion is that it means anything based on your other labs and how you feel. Always remember, a lupus diagnosis isn't made with just one lab test. Good luck!
My dsdna was positive my ana was negative
B2
I must be one of the odd ones... when I was diagnosed with lupus last year my dsdna levels was I believe >700. Was put on hydroxycloriqune (🤣 please excuse the terrible spelling) which has reduced my flares and the pain I get in my joints when I do flare up. But since starting the meds my dsdna has increased to >1000!
Wow! That level is high! I'm glad you are feeling better - cases like yours proves that every person and case is, indeed, different!
I like your information .
But can you tone down on being so happy about giving out bad news.