Last weekend at our support group gathering, a rheumatologist from my lupus clinic gave an excellent talk on interpreting blood test results. This was projected during the talk. Have a feeling some of you will be interested. Apologies for fuzzy image: shaky fingers!
🍀🍀🍀🍀 coco
PS I especially liked the note bottom left:
Criteria are cumulative and need not be present concurrently!
I've printed a copy for my rheumatology appt on 9th may. All my ana antibodies come back negative apart from antiphilosphoid (?) Hughes. I really hope I'm being treated for symptoms and not blood results. What did this consultant have to say about that.
xxxx
As I understand it, the overall requirement is stated across the top of the slide:
At least 4 of the listed criteria, and amongst those 4 there must be at least 1 from the clinical (symptoms & diagnoses) criteria box on the left AND at least 1 from the immunological (lab) box on the right
So, your antiphos. Hughes would count as 1 from the immunological (lab) box on the right, no?
Hope you'll let us know how this goes
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Many thanks!
Saved to show Gp and rheumy (adult and paediatric)
Did the speaker give much info on how positive the results have to be or fluctuating?
I know many on here may have weakly positive or positive then negative .
Of course on this criteria sheet nobody with all symptoms but negative bloods would get diagnosis or treatment?
Sorry was more thinking aloud so to speak than questioning or expecting this to have come up at your meeting.
How are you doing?Ok?
Are you having this ridiculous weather?We have 2"snow on back garden with it hailing like mad and the sun is shining at the front.
Take care xx
You're v welcome! Hope this can be helpful!
My impression is that the statement across the bottom left is relevant to your questions:
"Criteria are cumulative and need not be present concurrently"
Doesn't this statement mean lab results only need to have been positive at some point in order to be considered criteria. The actual figures aren't indicated as relevant, just the positivity, it seems
My impression is that someone whose history & presentation include multiple clinical criteria, being seen by a highly experienced & confident consultant, might well be considered a case worthy of "watchful waiting" with monitoring prior to provisional diagnosis of a connective tissue disorder & possible immune dysfunction
But I'm only relatively new to this and feeling my way
I'll check the notes I took during the talk tomorrow & get back to you if I find anything useful
CCCCCCOLD HERE...and our boiler died BRRRRRRRRR
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What a horrid boiler to do that now.
It's still only a cold sun here today so hope you get your boiler fixed asap.
That criteria post,now I have my other glasses on, is a useful tool for future use 're youngest.As seem to be having to build a case for him as two consultants have just retired and the new ones taking over may need a little hmm educating in right direction ?
Justgot full clinic follow up letter from Secretary,bit like pulling teeth,and there are a few things on there that
1 maybe useful
2 test results never mentioned to us
3 include notes requesting further investigation from specialist which have been denied by local clinic.
No wonder they didn't want to let me have it.Unfortunately for them I know where the secretaries offices are so knocked on their door which made it far more difficult for her to say no.I think my maternal instinct made me look scary 8 ) .Not that I advise others to do this of course.
Anyway so glad you posted yesterday as gave me the oomph to go to get letter today.
Sending warming caring thoughts xx
GOOD GOING LITTLEEFFIE 🐯🐯🌟🌟👏👏👏👏🍀🍀🍀🍀😘😘
I have sent this to my sister again. She has so many symptoms, some Identical to me and some not and they seem to be getting more severe. She tested negative for ANA and so her doc won't do any other testing or even contemplate the idea of lupus but I think she is seronegative.
Some of her symptoms seem very very concerning. I have tried to get her to push back on doc but she hasn't so far.
L 🐥 X
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That's very interesting Barnclown. I have often wondered how my diagnosis 'sticks' when I frequently have a very normal blood profile but I do satisfy more than enough of the criteria. Interestingly, despite my official Dx of UCTD based on weak antibodies, each and every one of my consultants has reverted to SLE as my diagnosis.
Thanks for posting x
You seem to me to be a vvvv good example of the kind of cases our rheumatologist was offering up as examples of how these criteria function in clinic. Am so glad this info is useful to you 👍🌟😘🍀
I was at the presentation as well and it is one of the most informative talks I have been too, it explained a lot cannot begin to express how grateful I am that the local LUPUS UK group organised this event
Dr Johnson's presentation was very informative and helped make a very complicated, technical subject much easier to understand. It was lovely to see such a good turnout at the meeting, which was very well organised by the Cambridgeshire group. cambridgeshirelupus.org.uk/
Well said, paul! It was really great to see you & chris there with us 🌟🌟👍🍀😘
PS the consultant's name is Dr Jordan
It was lovely to be there and catch up with some people I hadn't seen in a while 
Hi Coco - thanks for this - how does it square with your history of early onset lupus and acknowledged seronegative status? As you may recall my rheumy (now nearly previous) gave me the same sheet, but did not think that the "cumulative" part was of relevance to me. He was adamant that in Scotland no rheumatologist would diagnose seronegative Lupus. My Rheumatoid Factor was a weak positive for the first year of symptoms and my ANA was borderline once but has only been tested twice because I don't have Lupus of course. My ESR and CRP are always raised - although they fluctuate a lot according to my symptoms. He said this means something is wrong but isn't connective tissue disease related because of my negative autoantibodies in September.
I do think Methotrexate and Hydroxy might have chased off the RA symptoms after two years of taking them separately and together. But I'm post menopausal now and certainly met most of the criteria listed prior to my menopause - and have acquired others, especially arthritis and neuropathy since. I'm told this is down to allergies rather than Lupus. Maybe they are right but as the allergy triggers weren't ever found and I never had skin biopsies taken and was only brought to heel with oral or injectable steroids prescribed by GPs, I'll never be sure.
And when I'm feeling reasonably well I just assume I've been overthinking things as my new neurologist told me I do. But how many different problems can one person have that are progressing or ever present, but are seen as unrelated simply because of negative antibodies I wonder? My new GP pointed out that a person doesn't have raised inflammatory markers like mine just from over thinking. I tick most of the criteria apart from the ANA or others which are either negative or equivocal as I've said
I'm so drug averse that I feel it's right for me now to wait and watch and just keep researching food intolerances and vitamin and mineral deficiencies until something becomes clear. I'm off to see my old woman GP now to beg for Nefopam which I've left behind south - and by afternoon cannot walk for this severe pain in my left groin. The fact that I left this med behind at "home" speaks volumes for how well I have been in arthritic terms. But the fact that it's come on so badly suddenly (I'm guessing it's arthritis of the hip) - well I'm assuming that it's just going to be yet another unrelated, ageing wear and tear, post menopausal thing to get in the way of living a normal life.
Sorry to add this ramble to your otherwise coherent replies! X
👌👍👏 Please: never think/say sorry, twitchy: your posts & replies are always helpful. My feeling is that you are right to process each of your medical appts + practice thinking your complex conditions through out loud here as often as poss...I'm certain, from my own experience, that doing so stands you in good stead at all your consultations + helps many many of us here to figure out how to prep for appts & present in clinic & process our appts!
Everything you're saying makes me even more frustrated that you don't live down here, and are unlikely to be seen by our brilliant chief of lupus clinic...who I suspect would hunker down pronto to figure your versions of immune dysfunction + connective tissue disorder out....just as she has my versions of these. Yes, the diagnosis & treatment process has taken my lifetime...and our chief only got hold of me in my 50s when damage due to what we discovered was infant onset lupus had become glaringly visually obvious...but thanks to this obvious physical evidence during clinical examination + the detail I recorded in my personal medical history records (including a list of which prescrip meds I'd benefitted from & which I'd reacted badly to over the decades) led her to begin treatment immediately at our first appt.
and then the results of comprehensive blood tests taken that first day in clinic later satisfied at least the SUCC requirement for 1 immunological (lab) criteria (low complements)....and, as I understand it, due to my 50+ medical history and evidence on physical examination of the progressive cumulative multisystem debilitation involved more than satisfied the 4+ clinical (symptoms & diagnoses) criteria, + there is virtually no question that I would've tested sero pos had the medics dealing with my flares run immunological blood tests back then.
Whatever, there appears to be no question that I satisfy the SUCC clinical & immunologic criteria...and at this point, I feel more than ready to argue my case successfully with any clinician I encounter (so long as I'm still on my wonderful meds, which mean my cognitive impairment etc are damped down enough for me to think straight & express myself coherently...for sure, the obvious benefits of my confined therapy treatment plan meds support my diagnoses)
During the 5 years that followed my first breakthrough appt with our chief, I've learned that diagnosis & treatment really ARE an ongoing process. I've posted plenty here on forum about my experiences of this process over the years....so I won't go into detail now...but for sure I know I still have lots to learn & discover about diagnosis & treatment..and every research rheumatologist I meet during my BILAG reviews mentions that they too have lots to learn about diagnosis & treatment: thank goodness for True Detective consultants who aren't afraid to mention known unknowns!!!
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Can I borrow you to stand in my corner when I next visit a specialist Coco? 😀 I just seem to get messed in the head by these people and the fog takes over.
I have had ANA in my blood and my blood tests in January showed inflammatory markers. In previous times I've had two DVTs. Still no diagnosis!
Sorry to say I've not come across a true diagnostician.
You give us brilliant posts, thank you. 💐
Vvvv much feeling for you mabsie...it is so hard....I do hope your consultants are monitoring you carefully during this delay in figuring out the underlying cause/s....I wish I could come along....not sure I'd be much help, really, but just having someone with you, who does truly relate to what you're going through, does help
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I reckon you'd be inundated with requests for support Coco. My husband goes with me and does his best but gets confused with the medical speak.
Not seen the right people yet.
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I'm just crossing my fingers that my next rheumatologist is as open minded and non-arrogant as yours Coco. But I'm wondering if I'll even get beyond the registrar without being dismissed as an overweight middle aged woman with arthritis and IBS?! I'm very cynical these days - I guess it's a defence mechanism! X
Ps and I too have learned masses from this amazing and supportive community.
Hang in there dear twitchy......with every appt your posts prove that you're figuring out how to culture even more effective presentation skills....you will find the right medic/s eventually...in the meantime, keep on doing what you do so vvvvv well: pace yourself, lifestyle manage, stick to the treatment plans that are helping and ENJOY every minute of your marvellous creative life (a creative brilliance which, I feel, makes every aspect of your life vvvvv special). I'm so glad you're here...sorry to sound sentimental, but every day is better now that I know you! ❤️
Oh well it's very mutual Coco. In 45 minutes I have to see one of my old GPs down the hill to get some Nefopam. She's the one who said she believes I do have seronegative Lupus last year so we may have a bit to catch up today. She's also the one who got me into trouble with the last practice by writing on my notes "patient referred to community mental health team for severe depression and health related anxiety" three years ago.
It was nothing that a high dose vitamin D (I was deficient) couldn't sort out actually, but bad doctors I've seen subsequently have a way of eeking out the negative remarks on notes and failing to see stuff like pneumonia, CRP of 2 rising to 150, paired oligloconal bands, RA etc etc. Hmmm I'm going to be careful what I say to her this time - "gimme the drugs dear and keep the "anxious patient" comments to yourself please!"?! X
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Unless I missed it. Where is fatigue and joint pain? You can have joint pain without arthritis in Lupus.
Good one! I've been planning to ask about that at my next clinic. Am guessing these are covered by the main headings...they'd better be! Eg I'd want sub categories under arthritis, eg arthralgia & myalgia ....and serositis of course covers a lot of inflammatory process that causes fatigue. Listed criteria seem to me only the 'start' of discussion: what symptomatology& diagnoses specifically fit into each criteria? & on & on...👏👏👏👏
Hi nanleighh, looking carefully, the criteria are descriptives which include signs and symptoms I'm thinking. Serositis, arthritis,anaemia for example do cause pain and fatigue, I assume it's taken as a given. It's a set of medical criteria rather than a patients reading list.
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PM
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Thank you coco! 💞
Am glad we need not have all of the above simultaneously ! Quel horreur !!
PM
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EEEEEK: what a thought 😖😝👍🍀
Brave lupus warriors coco, with you our trusted leader 🗡🛡.
Fora ante!
PM
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Cum amore oscula
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Hi Barnclown
Thank you so much for posting this on Forum, am taking a copy to keep , do fulfil the criteria for diagnosis despite the difficulties!. So glad your AGM was such a good one and you managed to go. Would love to have your support at my appt's I think you would make such a difference.
TAKE CARE
Love Mistyx
Hi everyone I had suffered a severe flare of all symptoms from August last year, took ana test in Dec it was negative, tested again in April it was positive titre 1:80 , I hope this gives some hope not to give up on the testing x
Waiting for diagnosis 
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