New SLE disease definition: a points tally based on 'ever had' criteria, without need for dsDNA (and maybe ANA) or overlapping symptoms!!!

[eekt]

"Until now, classification of systemic lupus erythematosus (SLE) was a yes-or-no decision" 😖

UPDATE: Paper being presented to ACR on Monday 22nd October to propose including ANA-negative folks:

acrabstracts.org/abstract/i...

Here is the score sheet (>10 needed for SLE):

For each criterion, do not score if a more likely cause for the symptom exists.

Occurrence of a criterion on at least one occasion is sufficient.

Criteria need not occur simultaneously.

At least one clinical criterion must be present.

Within each domain, only the highest weighted criterion is counted toward the total score.

Constitutional Domain

Unexplained fever >38.3 C (2)

Muco-Cutaneous Domain

Non-scarring alopecia (2)

Oral ulcers (2)

Sub-acute cutaneous or discoid lupus (4)

Acute cutaneous lupus (6)

Arthritis Domain

Synovitis in two or more joints or tenderness in two or more joints or ≥30 minutes of morning stiffness (6)

Neurologic Domain

Delirium (2)

Psychosis (3)

Seizure (5)

Serositis Domain

Pleural or pericardial effusion (5)

Acute pericarditis (6)

Hematological Domain

Leukopenia (3)

Thrombocytopenia (4)

Autoimmune hemolysis (4)

Renal Domain

Proteinuria >0.5g 24 hours (4)

Renal biopsy with Class II or V lupus nephritis (8)

Renal biopsy with Class III or IV lupus nephritis (10)

Antiphospholipid Domain

Present (anti-cardiolipin antibody positive with medium or high units, or anti-β2-GP1 positive or lupus anticoagulant positive) (2)

Complement Proteins Domain

Low C3 or Low C4 (3)

Low C3 and Low C4 (4)

Highly Specific Antibodies Domain

Anti-dsDNA antibody (6)

Anti-Smith antibody (6)

the-rheumatologist.org/arti...

Formal endorsement by end of 2018! 🍾🥂

XOX EOLHPC 😘 I followed up on the tip in your post:

healthunlocked.com/lupusuk/...

[EOLHPC]

YAAAAAY👏👏👏👏👏 GO EEKT GO 🌟🌟🌟🌟🌟😘🍀

[eekt]

☹️ Another study says '(the new) criteria for SLE...possibly miss-classify the real SLE cases as non-SLE, especially if patients have low titer (<80) of ANA.'

Published at the same time as the new disease definition (June 2018):

ard.bmj.com/content/77/Supp...

AT least they're working on it! xxx

[eekt in reply to eekt]

Update: presentation at ACR Annual Meeting scheduled for 22/10/18:

'inclusion of ANA as an additional item (instead of entry criterion) could further enhance the sensitivity of the new SLE criteria at early stages.'

acrabstracts.org/abstract/i...

[EOLHPC in reply to eekt]

So, both hypermobility & lupus are going through these sort of revisions, which IS great ...except: this sort of change process can & does trigger flaring MPTSD in patients who survived horrendous long drawn out diagnostic ordeals and finally achieved convincing diagnosis + consistently pos response to treatment over considerable lengths of time...e.g. ME 🤦🏼‍♀️ and others here...inevitably my MPTSD flares Despite My Rational 👵🏻 Self...but i’ve done enough therapy to “cope” ok...and the reassuring messages broadcast loud & clear to us by the hypermobility experts & great groups like Ehelrs Danlos Support UK & The Hypermobility Syndromes Association HELP a lot...i know LUK will step up too...

i TRULY MADLY DEEPLY cope best when i know what’s in the literature, and have forum’s reactions to this stuff, so THANKS VVVVVV MUCH eekt💐💐😘

[eekt in reply to EOLHPC]

We're stuck in shifting sands, but there is reference to a 'paradigm shift' in classifying SLE/CTD which can only give us hope that there might one day be a diagnostic odyssey of less than 7 YEARS for SLE/CTD, as long as the gatekeepers aka GPs get the message that eg a rash in 2006, ulcers in 2012 and hair loss in 2015 could add up to autoimmunity and/or systemic illness... they might have to start using symptom checker 😁

'The majority of ANA-negative patients scored above the 2017 classification threshold' - those struggling with medics who rely solely on bloods should print this paper off. Plus many going through the ordeal might find they score over 10 in the new classification!

Thanks for the starting point EOLHPC ! 🐾🕵️‍♂️🧐 😍 😘 xxx

[EOLHPC in reply to eekt]

I’m just SO GLAD 🕵️‍♂️👩‍🎓👩‍💻 you are HERE with your ears pricked, eyes wide open, nose alert, brain focused...CANNOT thank you enough 🌈👵🏻💫😘

[eekt in reply to EOLHPC]

Thanxxxxx for giving me the confidence to post! 😚 🤗 🤩

[EOLHPC in reply to eekt]

💁🏼‍♀️ AM SO GLAD if anything i do helps: ❤️-felt enthusiasm + appreciation are something my wobbly 🧠 can still summon up the focus & umph for 🤣

[MsAndyIvy]

Thanks for doing the research and finding this. A rediagnosis for me may be insight.

[eekt in reply to MsAndyIvy]

Good, good, good!!! Let's see progress! Keep posting and let us know how you go! 🍾🥂 xxx

[Hidden]

Low anti-cardiolipin titres are also known to cause strokes/neurological disorders/seizures. Even low titres should be considered significant. The medical community tends to have this OCD over the higher numbers as "Yes" as if it's a competition. Well, they ought to think again.

[eekt in reply to Hidden]

Thanks! Great input autumnsonnet: I skimmed over that one because it's a test I've never had, but copied this from labtestsonline.org:

'The low to moderate amounts of antibody seen in these situations are frequently not significant, but they must be evaluated in conjunction with any signs, symptoms, and/or other clinical information.'

My mum had vascular dementia, so maybe I should. Thanks again! xxx

[KayHimm in reply to Hidden]

Very interesting question, Autumnsonnet. I have UCTD with low positive anti-cardiolipin antibodies. What I have been told by my rheumatologist and neurologist is that there have been many studies now that show low positive does not correlate with stroke. But they do seem to believe they cause the non-thrombotic symptoms like migraine. I am followed by brain MRI for mini strokes. This does seem inconsistent, right? Maybe it is because the criteria are classification criteria, not diagnostic. A low positive AC test may be significant if viewed in the context of certain patients. Although the new criteria do not include low titre AC, your doctor uses the information nonetheless. It would not be used in a research study, though. I am curious how your doctors explain your lab values to you. It is confusing! I am going to ask my neurologist. He is part of an autoimmune brain disease center where they are doing research.

[Hidden in reply to KayHimm]

I have seen comments on low titres ACs being significant. You have got the antibodies.

Researchers and doctors need to listen to patients more.

[KayHimm in reply to KayHimm]

Agreed!

[ecough]

Interesting! I received a negative ANA test result and literally just sent my dr a message about it to please explain if I no longer have lupus. I have an appointment with her end of Nov so I will definitely ask about this study! Thank you for being on top of the research and sharing this.

[eekt]

Just to add these are proposed new ACR/EULAR criteria (American/European): in the UK, emphasis is on the good ol' SLICC...but these three bodies of research will add weight to any argument against a 'NO' to SLE/CTD because of negative ANA/dsDNA and/or because symptoms came and went one at a time over years! 💪🤝🤛 xxx

[DJK99]

Oh my goodness eekt... thanks so much for posting this. Having very bad day (and week!) and, in a brief parting of the clouds of pain, I came across your wonderful post. You are one of the top bods on here for keepign us all up to date and supported. Thanks so much xx

[eekt in reply to DJK99]

Hoping - along the lines of the Horizon Placebo documentary - that forum support can bring you some pain relief, just knowing there's something more out there than dunce medics, I'm sure Paul_Howard our hero 💗 💖 💝 will agree 🌈 ☀️☄️xxx

[DJK99]

Oh eekt I'm sure he will...! He has been someone I'm so grateful to have spoken to from the off. And. You're a hero too. Quite tearful right now with all this - it's going to be life changing for some still undiagnosed and floundering... thanks again eekt - hope you are doing ok xx

[eekt in reply to DJK99]

I'm in the shifting sands myself but, you know, I really don't know if I'd be here to tell the tale without this forum and all the support especially from EOLHPC ,

Melba1 , whisperit , Lupiknits , Hidden , milkwoman and many, many others like lily18 with special feedback: because I was really struggling. Thanks so much for your kind words 💗💗💗 xxx

[DJK99 in reply to eekt]

I know eekt... you've mentioned all my faves on here too! Melba is great too! What would I do without you all?? Listen - I don't have positive ANA for some reason - but, having been mega sleeping most of my life, using a ton of expensive eye drops/skin creams/vitamins (inlcuding Super Elixir by Welleco which has a ton of anti- inflamatories in apparently), posh giving back Nikken water filters/extremely highly nutritious diet/massages/needles etc etc and trying to keep fit - but finally nearly collapsing for the past 5-6yrs, it was finally recognised by a new young GP that I have had consistently extremely low C4 and low C3, very low neutrophils for years and a ton of obvious text book symptoms... photo evidence and in his face at the time of my meet with the head honcho Rheumatologist in my area... He diagnosed me as probably having it since birth. I'll say - and my parents (who were anti orthodox medicine since I was born - so no seeing the doc with my rashes/heart/joint stuff when I was young and obviously in pain etc... both had most of my symptoms... ). Just looking at a photo of my sadly popped off mum with a lovely face of lesions. My dad had them too. And all the heart stuff. My brother has a pig valve! We just never questioned it and was told not to talk about health and just get on with it! But since this insanely draining job, frankly I'm a wreck. And still trying to work at 55 in complex social care stuff... Hitting the wall here ;(. So. What I am saying is, you don't have to be ANA positive - as my top Rheumy said - hoorah. But the meds are the same in the end, until you get the bad complications going... and so many have on here. Anyway... you have a shed load of symptoms I presume (sorry if you do) and it's presumably only a matter of time now with all this (thank gawd) new research going on. Been ridiculously closed off until now... and all of us floundering on the outside. Have to say though - Icouldn't tolerate Hydroxychloriquine so been on methotrexate for 7 months and nifedipine... and look at me right now... yes, my eyelashes have grown back and some my hair... but the drugs cannot help if you are working like a dawg..... as I am. Removal of stress as much as possible, plus "keepin fit", eating a clean excellent diet and all that is essential. And sleep.. a ton of it. Hope you can do all that.. and you will get the correct diagnosis pronto... if you haven't already (as I presume you are saying?). If there is anything I can do (although I'm not a Barnclown and the rest amazing person!) just ask.. xxx

[Lupiknits]

Splendid work here eekt !

I'm enrolled in a EULAR ten year study, because of my systemic sclerosis antibody, but don't get excited chaps! The results will be based on how many of us are dead after the ten years, and what we died of.

Somewhat morbid, but every little helps the medics try to puzzle us out.

[eekt in reply to Lupiknits]

Contributing to science Lupiknits! Here's hoping you well outlive the study! 🤗 🤩😚xxx

[DJK99 in reply to Lupiknits]

Oh my goodness! Only just read this Lupiknits.... yes, rather morbid indeed.. Jeez. You're certainly made of strong stuff - as are us all.. In awe. Hugs. x

[Lupiknits in reply to DJK99]

Well, all I was asked was if I was willing to take part in a survey. I checked it didn't involve placebos and then said yes. Please don't worry about me counting days or being frit! I have a very black sense of humour x

[DJK99 in reply to Lupiknits]

I got that! I’m in awe of the fab sense of humour - and yr obvious strength through all this! Works for me x