dsDna levels.

[Femme1]

I'm trying to find out what average levels of dsDNA tend to be at the start of a flare and then coming out. Everything I've read states that levels tend to spike just before and at onset of a flare and then fall. I'm asking because I had just come out of a period of worst symptoms by a few weeks when my dsDNA blood were taken and I had a level of 9.8 which was recorded as 'satisfactory'

I'm still at the stage of trying to find out what's going on, and have no diagnosis, but suspect lupus or diseases on this spectrum due to a long seemingly relevant medical history and family links etc.

My ANA was 1:160

Now I have read that this flares during activity then drops, and that anything over 1:80 is a cause for further checks.

There are no numbers re typical flare levels for dsDNA levels and wanted to be more informed before chatting again with GP.

Would I have likely had higher levels at the beginning of the flare? I'm guessing this is correct, but don't know the kind of percentage difference.

Anf how many completely healthy people have a dsDNA level of 9.8?

Many thanks you's

[Treetop33]

I think it depends on the person. My normal levels are about 16. I'm in a flare at 26 or above. It's just one marker among many.

[Femme1 in reply to Treetop33]

Thanks Treetop33I'm just thinking along the lines that I would have been much higher at the onset of the flare, multiple articles state that once you're in the flare itself dsDNA is suppressed somewhat, and therefore because I'd come out of the flare when the bloods were taken, I'm thinking this would have been lower than had I had it taken 3/4 weeks before?

[dg70]

I was told by my hospital that every hospital has their own measurement scale for dsdna blood tests so none of us can make a comparison with you really. Where I was 55 in one hospital my new hospital would not even consider that being high or not. They just took the rhuemys word for it that it was high. A year later at my new hospital I was 12 on their scale which was considered fine. They put it down to hydroxy working well for me. It gets so confusing, why is there not a universal way of testing us no matter what hospital you go to.

[Femme1]

I know, it's so annoying dg70. I had all of this doubt and months of reading and asking questions and researching with thyroid disease when struggling to get help after tears of symptoms and it feels like I'm back on the very same treadmill again. I feel even less confident about finding help via the GP now. How weird that some places have different opinions on blood levels of auto antibodies. It was exactly the same with the thyroid TSH test. It's like a fear that taking patient testimony and looking at the signs and symptoms and medical history will be wholly irresponsible if the blood result says 'borderline' or low positive.

[EeBeee]

Hello! From my understanding the normal range for a Dsdna is anywhere between 0-10. However what is considered a flare number will differ - as everything with lupus it’s all very individual. For example by the time I was diagnosed mine was 127. My rheumatologist said he’d like to see it come down to normal range or at least around 20/30 but I have been able to get below 70 even being on all of thr medication I’m on which is partly why he wants to switch me to more aggressive treatment. It is such a hard thing to navigate when things aren’t standardised but with a condition as unpredictable and individual as lupus I guess that would be too difficult… sorry, I hope that helps! Good luck with everything!

[Femme1 in reply to EeBeee]

Hi EeBeeWow those numbers are high!

I guess there's no doubt with results like that!

I hope you aren't struggling too much with your health issues related to this.

Thank you for the reply .

[Whippet_lady]

I was also going to ask about dsDNA. Yours sounds low to me, but what do I know? Not a lot so don't take my word for anything! You'd be better off asking your doctor, given the variations others have spoken about.

I saw my rheumy last week and received the results of my ds DNA in a letter yesterday. It says "dsDNA C3, C4 (dsDNA 26, C3/4 normal. Last year's dsDNA was 32, dsDNA on 2 occasions in 2022 was 70 and 90)"

I have no idea what any of this means or what my dsDNA is supposed to be, but had assumed (possibly wrongly looking at other replies) that it was OK because my C3 and C4 are normal. I don't know what C3 and C4 are either.

Can anyone shed any light?

[Femme1 in reply to Whippet_lady]

Whippet-lady.Those sound much higher too.

Maybe I'm in the early stages then if these are average levels ( if I even do have this)

I think the C results are compliment levels? but someone with by far better knowledge will no doubt explain . I've not had mine tested for about ten years.

[StriatedCaracara]

Interestingly this Lupus Foundation of America talks about positive anti dsDNA cases in relation to factors in the environment and mentions research into the effect of tobacco smoke.

I thought it was a pretty powerful video, it covered lots factors in the environment that might help lupus to develop and then also worsen flares.

healthunlocked.com/lupusuk/...

[Femme1 in reply to StriatedCaracara]

Thank you StriatedCaracara I'll take a look at these links. ☺️

[StriatedCaracara]

Info on different tests readability cut off etc

onlinelibrary.wiley.com/doi...