Did anyone posting here start their lupus journey with positive blood results without clinical symptoms?

So, following my visit to the dermatologist on Tuesday to be told I had rosacea not malar rash... I did some further research regarding positive anti-dsDNA and discovered two articles which held relevant information pertaining to my situation...

I already knew that the presence of positive levels of anti-dsDNA is supposed to indicate more serious sle ( i.e lupus nephritis). The results of an American study in 2001 found that in 74.2% of cases, the presence of these antibodies preceded clinical symptoms on average by 2.3 years! Once they are present in the blood, they will always be there so as my rheumatologist has told me it is likely that I have lupus and reading this article which states that symptoms are bound to follow has made me realise that looking after myself has to be my number one priority!

On another website, it states that anti-dsDNA only shows up in 30-40% of people with sle as it will not show in the blood unless the disease is active!

All very useful and will be discussing at my next appointment in September.

Has anyone else been on a similar journey?

[KayHimm]

Were you told why the doctor did the ANA? Usually it is done when there are symptoms of autoimmune disease.

[Hidden in reply to KayHimm]

Hi Kayhim, I was tested for lupus at request of neurologist last year after the discovery of a previous minor bleed on brain on an MRI scan... I'd worked quite a lot of overtime in Jan 2017 and went to Dr feeling unwell, she sent me for MRI to rule out neck problems causing some headaches. Saw neurologist privately in the end due to long wait on nhs and lupus tests ana and anti-dsdna came back positive in November. Then GP sent urgent referral to rheumatologist and had to wait until June 12th (7months) until first appointment... Bloods again came back positive and heart slightly enlarged on X-Ray, so advised to stay out of sun and next apt is in September.

[Buffy14]

Well I always thought that antidsdna was present in everyone with lupus it's news to me that it is only present in severe lupus like lupus nephritis , the antidsdna is the one result that confirms lupus it isn't present in any other disease . Also my antidsdna has always been positive even when the disease is not active .

[Hidden in reply to Buffy14]

That's really useful, thanks Buffy. I'm only going by information I've discovered, I think you're probably right, it's how they've written it.

[EOLHPC in reply to Buffy14]

Typical of lupus, there are always exceptions to the rule:

my infant onset lupus & early onset sjogrens meet enough required official diagnostic criteria despite my seronegativity.

Immunology thinks my seronegativity is mainly due to my early onset hypogammaglobulinaemia preventing me from being able to make antibodies.

[Buffy14 in reply to EOLHPC]

I know about seronegative I just hadn't heard that the antidsdna was usually only found in lupus nephritis , I have always been positive but I do have lupus nephritis , I always thought antidsdna was present in general in lupus x

[EOLHPC in reply to Buffy14]

Isn’t this the thing about lupus: the greatest consultant experts emphasise how little they really do know. I just feel vvvv lucky to meet the official diagnostic criteria despite being seroneg. stats indicate that only a tiny % of us can be seroneg and still meet these criteria. XOXO

[Treetop33 in reply to Buffy14]

I have positive anti-dsdna antibodies but not nephritis. What I understand is that the risk is higher but it doesn't always follow that it automatically means you have it or are likely to have it.

[Hidden in reply to Treetop33]

Hi Treetop33, thanks for your input. It's great to hear that I do not need to expect the worst outcome.... And whatever comes my way, whatever symptoms appear, I'll deal with it with the help and support of family, friends and those who are going on a similar journey. 👍

[eekt]

HI Wunder! UK Rheumies are allowed to used only the BSR Guideline (academic.oup.com/rheumatolo... for SLE assessment. It says '98% of patients will have positive ANA and/or anti-dsDNA antibodies'.

Not everyone with SLE will have nephritis: 'About one-third of SLE patients in the UK develop LN (nephritis)'.

Check out Table 4 for the diagnostic criteria. Malar rash is one, so maybe a second opinion would help?

Some (even reputable) websites are behind the times: dsDNA antibodies are *part* of the review for disease activity because they remain for life. xxx

[Hidden in reply to eekt]

Thanks eekt. Glad to hear it's only one third that go on to develop nephritis.... All the replies here are very informative. Will look forward to seeing my consultant again in Sept, in the meantime going to make the most of every day... Xx

[Paul_Howard Partner LUPUS UK]

Hi Hidden ,

I've got some information about anti-dsDNA from 'The Lupus Encyclopedia' by Donald E Thomas Jr. which may be of interest to you;

"Antibodies directed towards this DNA structure appear in 40% to 80% of people who have SLE (depending on the laboratory method and the patient population studied)."

"It is a fairly specific blood test for SLE (meaning that a positive test is not common in people who do not have SLE)."

"In addition to helping diagnose SLE, it can also be useful in managing and following the treatment of lupus because the levels of anti-dsDNA will fluctuate with disease activity in some people."

"In addition, people who are positive for anti-dsDNA are at increased risk of having lupus kidney disease or vasculitis as part of their disease. However, just as with the majority of tests used in SLE, these possibilities are less than perfect. There are people who are anti-dsDNA positive who do not have SLE, and there are certainly people who have SLE who are positive for anti-dsDNA and yet never develop kidney disease or vasculitis. When this test is positive, however, it helps the physician pay closer attention to these possibilities."

If you'd like more information about lupus and the kidneys, you can read/download our booklet at lupusuk.org.uk/wp-content/u...

[Hidden in reply to Paul_Howard]

Thanks Paul... I know it's a waiting game... I'm keeping record of any symptoms that may be relevant and know that it's only the monitoring process which may take time that will give me the answers in my case. Do you know whether the anti-dsDNA Bears any relevance to damage with the brain or heart or is it just the kidneys? Most info I've read states these antibodies are indicative of more serious sle such as nephritis... 🤔

[Paul_Howard Partner LUPUS UK in reply to Hidden]

Hi Hidden ,

It is hypothesised that anti-dsDNA could also be linked to brain involvement in lupus because the antibodies bind to the NMDA (N-methyl-D-aspartate) receptor found in the hippocampus and cortex of the brain. Certainly though, the antibody's presence is linked with more severe manifestations of the disease.

[Andfiona in reply to Paul_Howard]

Hi Paul my dsdna has gone to from 120 to 375 to over 400 at the moment. Also high esr and low complement. I don’t have signs of kidney or liver involvement. I’m doing most of my normal things including work and exercise, but quite sore with joints and nerves. Is there anything specific I should be looking out for? Rheum has ordered chest X-ray and increased steroids. I feel a bit frightened because I don’t know what lupus is inflaming in my body. I know you’re not a dr but can you point to anything I can read re high dsdna?

[Andfiona in reply to Andfiona]

Sorry to intrude on your thread x

[Paul_Howard Partner LUPUS UK in reply to Andfiona]

Hi Andfiona ,

Sorry about the delay in responding to your message. I've been out and about a bit recently with limited access to my computer.

High levels of dsDNA are generally indicative of more active lupus, so it is worth keeping track of symptoms that you experience and discuss them with your consultant. Whilst higher levels of dsDNA are often seen in people with kidney or brain involvement, it doesn't necessarily mean that everyone with high levels of dsDNA will experience these symptoms. It sounds like your rheumatologist is being prudent and monitoring you carefully.

[Andfiona in reply to Paul_Howard]

Thank you so much for replying I very much appreciate that

[Hidden in reply to Andfiona]

Hi Andfiona, glad you joined the thread! My anti dsdna level had reduced when tested last month - it was 47 in June and now 41. My rheumatologist, having waited another 7 months for my review appointment oappointment on the 2nd April, still insists this is significant and that I should carry on taking the hydroxychloroquine and stay out of the sun or cover up if going out... As I am still relatively symptom free, it's as a precaution against anything developing. Am to see him again in six months unless I present with anything before then. My vitamin D is low again and he has advised that I need to take vit D tabs indefinitely! Like yourself, he is monitoring and erring on the side of caution. Hopefully we will continue to stay well for as long as possible 🤔😊

[Andfiona in reply to Hidden]

Thank you so much. That is all massively helpful. I hope that you continue to stay well. Don’t know if it’s relevant or helpful to you but I have diagnosis of lupus profundus as well as sle so also see dermatologist and rheumatologist. My lupus ate a fair bit of muscle and fat on my glute which is how it all started for me. Take care and thanks again.

[Hidden in reply to Andfiona]

Wow... Didn't realise it could eat muscles... Will have to research that. Fortunately I'm not presenting with symptoms and chest and heart scans were clear - only detected tiny heart murmur which is nothing to worry about. An MRI in February 2017 showed a previous bleed on the brain which was why neurologist had me tested for lupus and although result was positive he determined that it was due to a venous anomaly which I may have had since birth! However, they couldn't date the bleed. So rheumatologist calling it uctd but advising probable lupus therefore a blessing in one sense that may have caught it early 🤗

[Hidden]

Thanks again Paul, due to see consultant on 25th Sept and I'm guessing they'll repeat bloods etching then. Will keep you posted.