🙋🏼♀️ Hello my lovelies...there has been a lot more discussion here about diagnostic signs, symptoms, manifestations & official diagnostic criteria. This official chart is a great reference, so thought i’d just pop it on for anyone interested (as you’ll see when you study it: seronegativity alone doesn’t necessarily mean you fail to meet official diagnostic criteria). One of the most expert rheumatology consultants at my univ hospital lupus clinic showed us this chart during a talk she gave our LUK local support group not long ago
Of course, the LUK website includes great info on all of this:
I also like this website because its SLE diagnosis info is very precise and comprehensive (covers signs, symptoms & manifestations), + it clearly & concisely explains the SLICC official diagnostic criteria AND gives solid info on differential diagnosis....including the lupus-like connective tissue disorders + sjogrens + rhups etc etc:
Thank you once again Coco for your wonderful input you really are a fantastic addition to this forum 😊😊I have been a bit quiet on here because I haven't felt well and just popping in periodically
really appreciate everything and all the time and effort you put into Your research and support you give to us on this forum
Thank you so much Barnclown for posting this helpful and interesting info!. Couldn't do without you as this is great outlining the explanation of UCTD and how it should be monitored!. I'm particularly interested in the 40-60 % category whose tests haven't changed over the years!. That's a high % don't you think Barnclown?. It's heartening that it can happen as I'm in that group!. I bet you have found this info helpful for yourself!. Thank you for sharing and good luck for tomorrow. Fingers tightly crossed X
Hello Coco. Thanks for sharing this up to date info, it makes it all a bit clearer doesn’t it and you put this up at the right time for me as I had my rheumy appt last week and although he mentioned me being on the ‘lupus spectrum’ he talked about CREST as he had done at my previous appt, I asked him if I was still in the UCTD category and he said no! he said I have CREST (limited Systemic Sclerosis) , I’ve just received a copy of the Gp letter and the diagnosis is SLE......I’m so confused😩!
After reading the differential diagnosis section Ssc I’m wondering if he meant I have SLE and overlapping Ssc!
Just when I start to get my head around a diagnosis it seems to change! 🙄
😟 Oh Diane....YIKES! I wonder if they have any idea how much this sort of thing unsettles us! I ❤️ that you’ve been able to use that link to winkle something sensible out of this letter👏👏👏👏...i bet you’re right: it’s an SLE/Ssc overlap thing! Am v much feeling for you...processing these appts is such an ordeal 😔. I’ll be processing my next rheumatology appt later this month....am “trying” to stay calm & positive 😏 🌈🕊💐🍀😘
Good luck for your rheumy appointment too Coco, I try and be prepared but I always manage to miss something out☹️! I’ve now had Azathioprine added to my list of drugs and he gave me a depo shot so I know whatever the diagnosis I’m being listened to and getting help, fingers crossed it’ll help.
I especially LOVED this uptodate link’s document when i got to this para on p9...i thought: OK👌👍💪✌️ that’s my seronegativity explained yet again (immunology, gastroenterology, rheumatology have all given me their explanations, but finding their reasoning corroborated in a document of this scope, precision, seriousness & establishment sanction is 🤩...🤷🏼♀️ HEAVENS: the lead authour credit on 1 goes to our HERO Daniel J Wallace MD, authout of The Lupus Book & The Sjogrens Book...and the doc was last updated in Sept 2017 🤗):
“Other factors that may also influence ANA negativity in SLE patients include disease duration and treatment exposure [27]. In our experience, the frequency of ANA-negative SLE is lower in patients presenting at an early stage of their disease. In addition, SLE patients who have longstanding disease and/or have undergone treatment may lose ANA reactivity and become serologically negative over time.”
This morning i was messing around on the uptodate website and dscovered you actually need to pay a subscription fee to access these documents...not sure how i managed to find & post the link that is getting us into the document without paying a subscription 🤷🏼♀️...but i certainly am willing to pay for access now i know how good this website’s downloadable material is! 🤗😘
Good question! The answer seems to be as complex as Lupus itself....as far as i can make out, this is the sort of answer ‘thoughtful’ medics might offer:
Malar rash is one of those “tricky bits” of diagnostic evidence. Possibly the significance of malar rash is best addressed most directly by approaching it the way it’s mentioned on p6 of the uptodate link document under the heading: classification. E.g. history (eg with photo evidence, or actual current evidence on physical examination) of photosensitive skin lesions such as malar rash are considered amongst clinical manifestations as “signs & symptoms” + “pertinent physical examination findings” of SLE (see p 2 & 3 of the uptodate link document) which are all part of the considerations that convince consultants to proceed with performing the lab tests & imaging investigations that can yield results fulfilling official SLICC srteria
So malar rash can be very relevant to diagnosis , but is not specifically listed as an official SLICC criteria in its own right
All of which, for what it’s worth, i think, backs up the uptodate document’s assertion that: SLE is tough to diagnose... so consultants with special, significant, substantial, full-on etc etc lupus expertise are best placed to undertake diagnosis (not some GP, or some dermatologist or some rheumatologist whose career has mainly involved caring for rheumatoid arthritis patients. Etc etc)
Barnclown, 🌠 a wealth of info you share on this sight. 20 yrs ago, in 30s I was clinically diagnosed with ANA RA Ssa SsB and felt great. Over the years, I’ve collected additional “friends” antiphosphis lipids; Lupus sle, hair loss ... bald for a while. As a homeopathic woman , not vegan... I fought prednisone with no luck w a rheumatologist I stayed w too long.. last flare so frightening,
The pain in hand, feet and head worse than kidney stones. Cognitive function was ziltz.. thought I lost my dog.. and balance poor.. I’m a good yogi. Three days, ice, ice; sweat and Dr only increase prednisone 50mg and offer opiates pain. Finally husband flew home. H20 and cucumber.. some crackers.. enough!
New Rheumy.. with osteoporosis and inability to convince old Dr. Of anything but RA.. time to get a grip👍 New Dr. Is well informed. Hoping positive. You have great and supportive group.
Hello Toryo! Glad you’ve found our wonderful forum: the info sharing & solidarity here are lifesavers! And your experience of autoimmune disease will help lots of us here too. Am very sorry things are extra tough for you now, and am v glad you’ve found a up to date new Dr 👍👍👍👍. Hope you’ll let us know how things go for you 😘🍀😘🍀😘🍀
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