Do inflammatory markers commonly decrease with age in long term lupus cases?

Yesterday I was doing a bit of online research into my various immunology issues. In several academic papers, I found references to inflammatory markers, especially ANA, often becoming less reliable indicators because readings decrease with age in older long term lupus patients whose disease is still active. Has anyone heard of this?

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  • I have seen some evidence in the past. Do you happen to have any link of the article?

  • Oh dear...will see if I can find a link...but it was only last night, some time after I'd been online, that the significance of this concept dawned on me. So, many thanks for letting me know you've run into mention of this too...and I'll see what I can find...I've tested sero neg sle & sjogrens from 58, but my lupus is infant onset & my Drs say they are confident positive markers could've been found earlier in my life, had tests been done

  • Hi barnclown I am well aware of the subject. I included certain "emotive" words in my post but decided to self-moderate lol You could also PM me if you much prefer the privacy it may afford..I appreciated your reply. Have a nice day x

  • 👏😂👍❗️

  • i think this is one of those links (see section on ANA)

    Diagnostic Testing and Interpretation of Tests for Autoimmunity

    ncbi.nlm.nih.gov/pmc/articl...

    ncbi.nlm.nih.gov › NCBI › Literature › PubMed Central (PMC)

    by C Castro - ‎2010 - ‎Cited by 23 - ‎Related articles

    12 Jan 2010 - Keywords: autoimmune, disease, laboratory, inflammatory markers, evaluation, ... Examining patients for potential autoimmune diseases is fraught with difficulty .... of low titer ANA occurs more frequently in elderly populations.

    sorry: am distracted but will look more closely at this asap...

  • Thank you for the website you provided Barnclown. I always look for reading about lupus since it's a mysterious desease and none of us have the same symptoms.

  • You're v welcome👍. My impression is that this link is considered a solid legit source here in the UK

  • How interesting! I became ANA positive for a few years prior to 2013 but already had a diagnosis of Lupus. I would say that my disease is more aggressive than ever yet my ANA is once again negative. I had assumed that I was simply becoming more 'undifferentiated' with time but perhaps it is an age/long term thing. This type of information is always useful for doubtful Consultants.

    Thanks for posting.

  • Yes, really useful...am KICKING MYSELF for not saving those links. GRRRR. But, whatever, we do know how unreliable inflammatory markers can be anyway...right? It seems that mainly medics with only superficial experience of autoimmune conditions rely on marker results...?

    PS think i've just found one of those links: see my reply above to ferntree

  • I have pm-ed you, barnclown if that's okay :) Fab. thread...x Hard hitting.

  • Hiya,

    I had my Gastro appointment this week. ( AI Hepatitis) I found that immunology raised its head which has not been investigated before and having heard of this before, wondered why it should be looked at now? Is there some research out there which has prompted it?

    I ain't gettin any younger so, too would be interested in it.

    OXOX

    ⚽️

  • Vvvv interesting! I know almost nothing about hepatitis, except that I was vaccinated against it when I was 5 or 6 because my father got hepatitis C. However, my impression is that immunology is flavour of the month generally at the mo, re 'individualised' treatment for almost everything, from cancers to autoimmune conditions etc. the link I posted in this thread, above, is yo an article published in an immunology journal...you may find it quite useful, but I haven't found anything in it re hepatitis...

    I hope you feel that gastro appt went well for you, footy

    XO🍀

  • I have one major ruleI never really ever go online to research anything to do with my illness. why because I found so much conflicting information over the 32 years of living with lupus it tends to confuse me even more.when I go and see my consultant he doesn't mention all blood results because it seems a lot of them are now irrelevant and it's more about controlling pain fatigue tiredness and mental health. Also dexa scans, heart and lung health.

    Your research could well be very relevant.

  • Totally can relate to your reply kazp...am ultra cautious researching online...I don't have time to waste (am 61 going on 91) - just as ultra cautious as I am taking any medic's comments at face value. My rule is: suck it & see: if I don't notice something positive or corroborating within 3 months...remain skeptical & keep eyes pealed, ears flapping!💪👌👍👏

  • and ask lots & lots of questions I'm always firing them at my GP and Consultant!

  • Here in the US Once your ANA is positive and you have positive auto antibodies and a diagnosis of lupus they don't ever do the ANA test again. The rheumatologist says that All treatment is based on symptoms at that point. He also says you can go to different labs and maybe even get a negative result. Do you know what the purpose of repeating the test over again are? I would be interested to know.

  • Hi nan! I was born in Philadelphia in 1953 & diagnosed not long after with infant inset lupus...diagnosis repeated as I grew up at least 1 more time, but my mother never told me...I just thought I was a kind of weird over-reactive, semi-weakling compared to my siblings & friends...and of course I overcompensating by making out I was the toughest of us all, braving every fever, rash & infection as if it was nothing etc etc. I moved to the UK at 21 where the NHS inherited me without any official medical history except for Vaccinations. So, IF I ever had my ANA tested in the states, that's lost.

    We only know about those early lupus diagnoses because my mother confessed when a brilliant UK rheumatologist provisionally diagnosed me with SLE 4 years ago @58 years old, based on oral history, clinical examination & 37 years of UK NHS medical records including a host of typical secondary autoimmune condition diagnoses . At that point I tested sero neg, and have remained so...but I am feeling better than I have since the 1970s on my immunosuppressant treatment plan (daily hydroxy + myco + amitrip + pred tapers + a host of prescription topicals etc etc).

    My understanding is that in cases like mine, being handled by a NHS internationally famous teaching hospital's dedicated rheumatology lupus & vasculitis clinic, my ANA will be retested when my consultants think there could well be a positive result. e.g. At the moment I'm in the early stages of having my hypogammaglobulinaemia investigated by immunology at the same hospital, and I suspect they will have checked my ANA again...will find out at my next appt.

    Hope that goes some way to answering your question...I suspect someone else here can give you a much better answer - if no one spots your question in this thread, I hope you'll post it as question header on here...because I'd be vvv interested in what others have to say

  • I think spending anymore money / time on antibodies like "ANA" is a waste of time, personally. They are probably running it to see if there's a "proof" of the disease with the cheapest possible antibody test JUST IN CASE.

    If it's an internationally renown rheumatology centre as it is known as, they ought to run some comprehensive genetic tests to check markers. Based on your symptoms, you probably have several markers as I do.

    Rheumatology's massive downfall rests on their over-reliance on "antibodies" as the clinical absolute when in REALITY, it is remotely absolute or reliable. Stop spending money on chasing antibodies, get to the genetic profiling on autoimmune genes as nobody really fits into "lupus" or "RA" easily except very few, these are all mixed and intertwined in the genetic level. Certain ethnic groups are far more affected by syndromes like Lupus. Looking for a clue from antibodies may work for some but not for others. Rheumatology ought to own up this FACT sooner the better. I have certain antibodies prior to the treatments but you are on Myco etc how on earth they think there are antibodies floating around in your blood? It does not make ANY kind of sense whilst you are wondering what's going on. Sorry to be blunt.

  • Yours sounds like the voice of an experienced & informed immune dysfunction patient...someone who has been observing & thinking about all this for some time. My feeling is, we need patients like you speaking out bluntly & with confidence. Patients who are newer to this world, like me, do well, I feel, to keep our eyes wide open....view points like yours are vvvvv important & significant

  • Barnclown Thank you for the kind words and your willingness to understand.

    My only REAL concern is Myco's long-term effects on our/my already dysfunctional / haphazard immune system. I simply cannot ignore reports from other patients who have been on Myco developing breast cancer or other type of cancer etc. It's a double edge sword. Immune system is unfortunately directly linked to our long-term survival. If immune system is reduced down so much, it affects you / us in a major sort of way. If it's Myco causing the current issues you are faced with, best not to ignore it and address this, properly. Having said that, I know that I would not survive without Myco. So it's a Sh!t situation to be in. But perhaps, your immunologist may have more ammunition stored for you given the higher standard of care given at the hospital. I'm seeing an immunologist again so perhaps, we can compare notes again. Wishing you well and take care.

  • exactly!

    I am kind of lucky: my predisposition to multi system cancers is well documented & i am being well monitored by all the clinics i attend. my inutero expsure to DES + my chondrosarcoma amputation are v important to this, as are significant immediate family history. and the part immunosuppression can play is clear....as is the part uncontrolled inflammation can play (this is what sparked off my chondrosarcoma (which drs & co thought was arthritis for 14 years...))....so, fingers crossed

    thanks & take care...hoping for updates re your immunology experience...

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