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The only thing I can really chime in on is the dsdna. Sounds like your lab does the same values mine does (under 4 negative, 5-9 interdeterminate, 10+ positive - max reading 300). Of all the reading I've done, this ref range is **possibly** with a new method thats auto done by a laser setup by bioplex. I cannot for the life of me find out the sensitivity or specificity or if it can accidentally bind with ssdna like the ELISA test.

20 although outside of the standard deviations is probably a positive, but its not insanely high. Anything with a positive value will read high on labwork.
Your rheum will probably retest, they almost never trust another labs work. Because of all the methods of testing dsdna now, its highly possible that you will show positive in one method, but not in another. This happened to me with dsdna with 2 different tests by 3 different labs(2 positives, 1 negative) and that leaves me more confused.

Complement levels are looked at in the whole picture and are watched for drops. The standard range is sort of wonky from my understanding, unless the reading is very very low during the first tests.. So a complement reading thats low could be normal for one person, or a complement reading inside normal could be low for the next person. So these are retested and followed for drops/rises.
Im not sure if the complements were by bioplex, just the dsdna test I know for sure was for me in at least one instance, maybe two.

From my limited understanding yet tons of reading, the bioplex was calibrated to work like the ELISA for WHO levels. so less than 4IU/ml is about equivalent to less than 30... 5-9 = 30-50... 10+ IU/ml = over 50IU/ml and anything outside of the standard deviation of 1-2 units is significant or not false positive. *head spinning*

My current rheumy is not yet board certified and in training. He's harsh, doesnt explain much, has trouble reading his own tests and calls everything false positives... So I'm seeing someone else in a few weeks with more experience. Hopefully he can shed some light.
Dont feel bad about the name mispell!

VeeJ is right. I meet 4+ of 11 criteria including positive ANA, DSDNA, arthritis & malar rash, but since dsdna is close to complements level and not "off the chart" I have no diagnosis and no treatment still.

With anything in the urine, I think they'd retest to look for more abnormalities before doing 24/hr catch or biopsy. It may have been a contamination.

The multiplex machines tend not to pick up ANA below 1:160, they can, but not usually. My doc didnt follow up the ANA with a IFA titer, but some might.

Also like VeeJ said, theres grey areas.. UCTD, pre lupus, MCTD, etc... A good rheum will at the very least watch and see and some will treat conservatively in the meantime.
Precisely V,

A good doctor would want to follow up in a person with vague symptoms and a low to moderate positive dsdna and investigate the possibilities.

Its easy for a doctor to diagnose SLE in someone with extremely high dsdna, high anti SM, nephritis, discoid rashed and joint pain... Its those maybe or iffy results and symptoms that get confusing for everybody.
The good news is FARR is a really good test for pathogenic dsdna. Its less sensitive, but way more specific as it only tests high avidity DSDNA. I believe its even more sensitive than IFA...

I get the feeling many doctors dont trust the multiplex bead assays. I'm not sure if this is because there is little information on them still... Experience... Or inside information. I honestly did a TON of searching on the specificity of them and the only info I can concretely find is conflict of interest (by manufacturers claiming %98+ specificity, false positive less than %1) and ONE or two studies claiming it has predictive results similar to FARR.

Plaquenil does take a long time to work (4-9 months) so its good if she's having lots of pain now not managed by NSAIDs to have a plan in place. Obviously, your daughter can be her own advocate and accept/reject any plans put in place if she doesnt feel OK with taking certain medications.

Seeking a 2nd opinion can be a good thing, but do find a good referral. Some "top" rheums are only interested in patients of interest to them. That doesnt make them bad, just dismissive of those that dont fall into certain categories.
I'll add my experience to this thread. I've been in limbo since December. (Symptoms are muscle aches, nausea, fatigue and stiff hands and feet.)

I had the multiplex ANA screen and had a positive ANA and dsDNA of 32 IU/mL; all other tested parameters were normal. I was referred to a rheumatologist who - of course - ordered additional tests. He was VERY dismissive regarding the results of my first test. My second set of test results came in in April. I don't have the numbers or method, but the dsDNA result was elevated. (I requested a copy of the labs last week.) However, my ANA titer was negative. Since ANA means "anti-nuclear antibody" and dsDNA antibodies are a type of anti-nuclear anti-body, clearly, there is an error of some sort. He found no clinical significance to the results and told me to come back in six months for follow up test if I wished.

Meanwhile, whatever is going on waxes and wanes. I definitely feel better in summer, as fall rolls around I'm feeling crummy. So back to my PCP and he retests. Again, everything normal except for the ANA and dsDNA result of 42 IU/mL. The reference range is positive for anything over 10 IU/mL.

Very tough to put those number into a meaningful context. And it seems I have excellent company.

I am very blessed to have a friend up here with uncomplicated lupus. She's been on plaquenil for over 15 years and has a very normal life with the occasional off day. Knowing her has been a tremendous help.

So this is a great thread. Thank you Alicakes and Veej for your comments. And thank you Complement for the good discussion.

No dx for me yet, and I'm 10 month into the process. Such is life sometimes:jester:
I can only give more anecdotal possibilities.

If steroids helped at all, then there was definitely SOME inflammation going on (but also that was noted by sed rate & CRP).

I use mobic 15mg myself, and at first thought it wasnt helping, until I accidently missed a day, and realized the real problem is that I started it during a lull in pain. It actually helps a LOT for joint pain. Mobic doesnt help me at all with fatigue though. I think the dosage of steroid and/or nsaid depends on the patient. Some do better on high dose steroids, but if a low dose steroid combo works better for your daughter than thats great news as long term steroid use isnt good.

Yes, you can have MCTD with high dsdna. Think of MCTD not as a seperate disease, but multiple diseases. (hence, mixed or multiple connective tissue disease). Its like having lupus+sjrogen's+whatever... A mixture of symptoms from each one combines to make MCTD. DSDNA is positive in mctds sometimes, as it can also positive in auto immune hepatitis, sjrogens, RA, and others.
So, in a diagnosis of MCTD the rheumatologist may say it swings more towards this disease or that, but will look at the major complaint symptoms individually.

In the end, in *most* cases of autoimmune, once its known that the issues are auto immune they are generally ALL treated with the same general things. Methotrexate & corticosteroids are drugs used for pretty much every one. RA, lupus, Psoratic arthritis, etc. etc etc. I think maybe like plaquenil may not be really beneficial for some diseases but is for others.... but I could be wrong.

With a dramatic increase in DSDNA (greater than %30) it means the kidneys should be watched closely. Doesnt mean necessarily anything will happen, just means they should keep their eyes open. You said the DSDNA was IFA, but that doesnt sound like an IFA result (IFA results are reported in titers, ie 1:10, 1:20, 1:40 etc etc) and you cannot comapre the IFA titer to the original DSDNA test with a range of 0-4 5-9 10+... its like - apples & oranges.
Akicake, thanks for your very helpful input about MCTD as an overlap disease that could present itself with a positive dsdna. Her very high sed rate (69) at the beginning was indicative of the noticeable inflammation but it was surprising to see it didn't come down after 12 days of taking steroid, despite symptom relief.

The assay used this time for dsdna was the same as last time and by the same lab, done in a major teaching hospital. The rheumy said she would want that to be measure this second time with FARR but the result shows exactly the same assay was used (and we will ask her about that) with normal being less than 4. So, yes, it is a big increase (from 20 to 34) and I'm concerned.

Vee, the complete urinalysis showed only blood (70, up from 50) and a few mucous and squamous epithelial cells, but NO PROTEIN, and NO CELL CAST, as was the case before. Kidney function tests (blood creatinine and bun) were normal last month and was not ordered again. So this blood in urine cannot be contamination, as she had it done a week before her period. So could there be kidney involvement that shows itself with only blood in urine?! Thank you for responding.
Rheumy said itís MCTD and not lupus!! Her rationale being a positive RNP (4.8) and normal/good complement levels (even though dsdna is positive and the symptom were limited to joint pain, minor finger swelling, and faigue).

She was not concerned about increasing level of dsdna in 5 weeks (from 20 to 34, normal <4) because of normal kidney function test, no protein and no cell cast in urine, and good level of complements. She also was not concerned about the blood in urine (no rbc), as far as it being related to the autoimmune condition, and asked us to follow up on that with pcp.

This time, rheumy did not mention methotrexate at all ! And said to continue with Mobic as needed (given her minimal finger swelling and joint pain, no fatigue, and no other symptoms) and wait for symptoms to get worse before starting Plaquenil!

We asked if she expected the sed rate and CRP measured last week (12 days into taking Medrol) to be identical to the levels measure at the very beginning of her symptoms a few weeks ago (although at the beginning, her symptoms were not at their peak), to which she didnít have an answer. She repeated those test again and the day after we got the result showing the sed rate being as high as the week before (67, normal <20) and CRP being even higher (2.2 compared to 1.8 the week before, normal <1). We talked to her again and she was concerned and puzzled and even mentioned to start Plaquenil right away but then agreed that maybe we should wait for 2-3 weeks and measure them again and see what the pattern is and go from there. She also suggested that we follow up on the elevated CRP with other doctors! Rheumy said she is not concerned about high sed rate because it can be due to anemia (the anemia is mild hgb=11.3, RBC=3.9) and it takes time for it to come down, but expected the CRP to be lower and its increase concerns her and she canít explain it. So, it seems that we have to figure this out with another specialist?! I would appreciate any input. Thanks.
Hi all,
I have some questions and would really appreciate your feedback. First some updates:
After our last appointment with the first rheumatologist, we felt the need to see another rheumatologist who was highly recommended. We got lucky and were able to see her quickly (last Oct.) instead of waiting another 9 months! She was extremely thorough in her examinations and had studied all my daughter's history and test results in advance and knew every single result by heart. Here is her assessments during that visit:
1. She disagreed with the diagnosis of MCTD given by the first rheumy, because of lack of any symptoms of polymyositis or scleroderma to justify MCTD, despite the positive RNP.
2. For the presence of microscopic blood in urine (a consistent 5-10 hpf) in the absence of protein and cell cast in multiple tests, she said it has nothing to do with lupus and asked us to follow up with a urologist. We did that (with a highly reputable urologist), and the results (urine cytology, CT with contrast, and cystoscopy) were all negative. The urologist said that she could be one of those who would be spilling a few RBCs without any underlying problems, but we will keep an eye on her for a while just to make sure.
3. She started her on Plaquenil, but said that she thinks she'll end up on Methotrexate (soon) and she won't be surprised if my daughter calls hers in a couple of weeks and asks for more steroids, given the inflammation in her joints. Luckily my daughter responded quickly and wonderfully to Plaquenil. After 3 weeks, she had no pain and no need for taking Mobic, and after two more weeks, the remaining minor swelling in her fingers were gone, and no more fatigue. She has felt 100 percent since.
4. She ordered an echocardiogram and a pulmonary function test, just to have a baseline data in case if in the future we face any heart or lung involvement, because of her positive RNP.

During our second visit with her which was last week, few things came up:
5. She was pleased that my daughter is feeling so well on Plaquenil. She said she needs to stay on it for a year or two without flares before a reduction in dosage can be considered. Her dsdna was down to 0.5, from 34 previously (normal <4). She said her disease is stable at this point.
6. She asked her about any new symptoms which my daughter said none, but she asked her specifically if she has experienced changing color in her fingers with the very cold weather (in our previous visit she said that she expects Raynaud's to show up soon). My daughter said in a couple of instances when she was out for a while in brutally cold days (and with a not so good pair of gloves), her finger tips went numb by the time she got home and color was different. When doctor said "it was kind of purplish, right?", she said yes. So the rheumy said that her diagnosis is lupus and added to her notes that Raynaud's is confirmed.
My question is how do you know for sure you have Raynaud's, or even a mild one? My daughter (and her fiance) say that on those two instances, the color of her finger tips were mainly reddish and not really blue or purple, and that she has no problem taking stuff from the freezer or when out in the cold that is not as bitter (sub-zero) as those days. I know that I get the same numb and red fingers from being out for a while in extreme cold weather?
7. She said that while the ecchocardiogram result was normal, the result of PFT was abnormal and asked us to see a pulmonologist.

The numbers on the PFT are quite low with a FVC of 62% and DLCO of 64%, which to my limited knowledge indicates a restrictive pattern. I am aware of pulmonary involvement in lupus and pulmonary fibrosis as a possibility (which I see being reported more by the scleroderma and MCTD patients than by the lupus patients on various forums). We will see the pulmonologist soon who probably will have her go for a HRCT and maybe a repeat PFT. So here are my questions regarding the PFT:
a) Is it possible to have an abnormal test for technical reasons? I remember my daughter told me right after her test that it was so confusing and frustrating and she wanted it to be over and the technician could not get a reading and had her repeat many times to get a reading?
b) Can someone have such low numbers without any shortness of breath? She says going up flights of stairs is not a problem for her. She has been coughing for a a few weeks after catching a cold/flue but the cough is almost gone now. The same happened last winter when she caught a cold and cough lasted for almost two months and then it stopped finally with no more problems.
c) Can you have a significant drop in dsdna and a stable disease but ongoing problems with lungs? But at the same time we don't know what was her lung function at the beginning of all this six months ago?
Sorry for such a long post. Thanks so much for reading and helping.

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