Hope everyone is as well as possible. I know Paul shared this paper when it was in pre-published form but it's now just been officially published and we wanted you all to have access to it.
One of the biggest points is the importance of doctors listening to- and believing- reports of symptoms. If you've struggled to be diagnosed (or still struggling) or received a misdiagnosis, it's not your fault and you certainly are not alone.
Please feel free to print this or send the link to any of your doctors that are struggling to understand lupus/other systemic autoimmune diseases.
We thought the graph of most common symptoms would also be interesting.
Thanks so much to all those who participated in this study and our other studies. Together we can inform, improve and inspire change for the better
Written by
MelanieSloan
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🤩 THANKS Melanie: 👍am sharing with all my nearests & dearests! BRILLIANT & IMPORTANT work: a HUGE achievement: CONGRATS & THANKS to EVERYONE involved 💐💐💐💐👏👏👏👏❤️🍀❤️🍀, Coco
This research is from ALL of us on the forum. It was the inspirational stories and people here that generated the ideas for it and made us feel it was so important to research and publish, so doctors could read the combined stories and learn from us - the patients.
It was only possible with the funding and support from the fantastic LUPUS UK, and the great participants in the study who bravely opened up about the difficulties they'd faced.
Also the truly amazing patient representatives and study rheumatologists, Prof D'Cruz, Prof Gordon, Chris Wincup and Elliott Lever, who have all given up their time for free to help and advise on these patient- centred studies because they also feel so passionately about improving the lives and care of lupus and other systemic autoimmune patients.
So a massive thank you to everyone and we really look forward to working with you all on the next research
To you, your team + EVERYONE here: 🤝🤝🤝🤝🤝🤝🤝 I ❤️ that we’re ALL 🦓s together & ALL joined together doing the BEST we can for future generations of 🦓s...makes this 🦓life more worthwhile, to me anyway 👏👏👏👏🍀❤️🍀❤️
Hi Lisalou, unfortunately a lot of doctors think that's the case. If you show whoever told you this the paragraph in the discussion of this paper that covers ANA/dsDNA they'll hopefully understand better (and point out that this paragraph comes from two of the top lupus specialists in the country). There are also multiple references to studies that are now finding that serology can be negative initially, vary, or become negative over time. So someone who is 'seronegative' may actually have been seropositive at some stage in the past or become seropositive in the future. They need to work much more on symptoms rather than just blood results, and much more research into blood results and developing better tests is needed. Some of the tests that are sensitive enough just haven't been developed yet.
Often those with the most dysfunctional immune systems (sometimes from a primary immunodeficiency disease that then makes lupus/ CTD more likely to develop but may be seronegative) are seronegative.
Better tests need to be developed. It's often a case that each individual person will have their own biomarkers, some of which may not be 'typical' but which show disease activity in them. It needs a really thorough doctor to work with to find out which ones though - and they need the basic knowledge of which tests to try.
Hm, hair loss appears to be the only symptom reported not connected to Covid so far..
I'll be sending the link to my rheumy, as my GP's disbelief in symptoms and ensuing confabulations GP had about me appear contagious since my hospital file now contains rheumy's allegations of fabricated problems (like hearing loss, as verified by audiology 🤪😋😤)...burying my scientifically-verified SLE, though since a change in testing method my dsDNA has been zero despite flares manifesting themselves in a malar rash etc
...the only thing is - gee whizz - reading is not his strong point, as testified by his complete misinterpretation of the BSR Covid guidance, which he understood to be 'defer all treatment'...😱
I've come over all emotional just looking at what we lupies all know in black and white, especially thinking of my mum on VE Day, sixteen, joyous and looking forward to life after rationing, only to be smitten with lupus that went undiagnosed lifelong
Printing off a copy for my ex-GP now, and I'll ask him to read it and share it with his colleagues as part of the remediation package I'll require him to do in response to his carefully-worded MDU-checked grovelling apology for four years of gaslighting 💪
Thanks Melanie and Paul and LUK, with this great work, maybe there's light at the end of the tunnel for lupus diagnosis! xxx
What an excellent piece of research and thank you for sharing.
This is so in line with my wife's experiences. We struggled for over two years with the system saying it was psychological when it clearly wasnt, rheumatologists saying it was fibromyalgia when it clearly wasnt.
To my mind to define whether you have got something you first have to define exactly what it is. I havent to date seen anything which precisely defines what Lupus, CTD, UCTD etc are to a level of definition where they can be differentiated from other staff.
If you then combine the above with placing the onus of judgement on a rheumatologist. In my experience rheumys who are far more comfortable dealing with issues of physical movement than they are with an immune problem. (I think rheumys are great by the way)
To know whether you are looking at a cat you need to know what a cat looks like and also be aware that you have very limited vision and are looking through fog ... and if that wasnt enough if you get it wrong you could kill someone.
So if you cant tell between a cat and a dog why bother just try food than feeds them both or if your animal has a particular liking for cat food and doesnt like dog food then it probably is a cat. Then you can keep giving it cat food it is more of a tiddles rather than a rufus.
I think i have just about exhausted that analogy along with the patience of all who read this.
And given the importance and difficulty in spotting cats and the risks of getting it wrong make sure you have an experienced cat spotter. Avoid those who spot dogs because in the haze everything looks like a dog.
I think I have just about exhausted the cat dog analogy at least for now.
Freckle1000, She had a really bad flare last year in which her haemaglobin and phosphates dropped to life threatening levels. She has recovered since very well and returned to work just before she was shielded. Enjoying life now thanks.
Like I said to you before, I have read and read this and every time I do, the weight of it and the impact it will have on Rheumatologists, Rheumy Nurses and GPs etc hits me harder. The quotes from the patients themselves are particularly hard hitting and difficult to actually read. It's so emotive.
I will be sending this far and wide in Wales.
Let's hope it gets those it's targeted at, thinking how shameful our treatment is and how we deserve better.
I cannot thank you and your team of experts and researchers enough.
Hmmm, wouldn't it be good to have a link to this in the Wiki Medically Unexplained Symptoms page (even better would be to hack every single MUS link and replace it with a link to this <evil grin>..)?...maybe someone has bored teenagers at home? xxx
.....I have a couple that slumber until noon - that will keep them amused and perhaps they could quote jimbo’s cat analogy and post a video clip of Ernst Stavro Bloomfield stroking his cat - he was a pretty evil character! Xx
ooooh, that would be good, plus some Tweets on this paper and the Covid-like symptoms would be good...hm, keep meaning to set up a Twitter account but..! xxx
Thank you thank you thank you. That was like reading a study of ME! I appreciate all your hard work honestly! When covid is over I will be printing this and giving it to my rheumy with look of glea on my face! I can't thank you enough 👍😀😋 oh and I'm saving up to see a LUPUS specialist one who knows what they are talking about. If I could skip I would 🤭🤭xx
Thankyou Melanie, I fit into this and whilst I have no one to share it with, my go would smirk more than she does now , even with visible symptoms but it’s somewhat helpful to know I’m not alone and not crazy. I’m fed up with years of symptoms seen, warranting tests to just be told tests clear , they don’t know .
This should be sent to every doctor , every specialist as awareness , I wouldn’t like to guess my own diagnosis but I know my symptoms and all who took part, who put this together are helping them , they need to read and learn from our awful symptoms and experiences. Help to help.
Thanks so much Melanie for sharing this important study. Its wonderful how we've all helped in producing the interesting results. Its also a great feeling that it will hopefully help get us better treatment, diagnoses and a more helpful approach from the doctors and consultants we have to be in contact with!. Sadly, still its much needed!. Xx
Its a wonderful and well balanced peice of research. Thankyou so much for you're dedication towards this much needed reaseach topic.
Not only will it make us feel less discomboblated and alone with these issues - it will help empower us forward into a better future.
Sending my first copy to The Australian Medical board. ( as a reply to a complaint outcome ) Its also given me brilliant scaffolded information that I can attatch my own tangents and words to when I reply. Then I'll probably carry a copy around with me - for the next time apalling discrimination happens . Instead of leaving the room distraught - I'll just hand the paper over and leave knowing that's the best thing I can do.
I think that's a brilliant ides, taking a copy to appointments with youand if you are made to feel that you are not being believed / or that you are exaggerating symptoms / your blood tests are negative so you can't be flaring etc etc, hand a copy to them as you leave.
I hope that this is shared far and wide by the British Society of Rheumatology here etc etc - everyone dealing with lupus patients should read. GPs and Consultants .
Like many, I had a 7 year journey before lupus diagnosis. My sister is suffering terribly and her symptoms are like looking at myself. She waited a year for a rheumy appt, which came before lockdown. After a few bloods and a half hour consultation, they say fibro and discharged her. She is asking GP to refer her to st Thomas, because if it isn't lupus, she can be sure about what they do diagnose.
While I accept Fibro is a real illness for many - I think it's also time for it to be outed as a life threatening discriminatory label.
The sheer volume of people with lupus who have endured this dangerous scenario is a obscene.
Technically - Fibro is a ' condition ' . For better or for worse its very hard to prove someone has a condition. Ask you're sister's Doctors for tangible medical and scientific proof of the existence of her Fibromyalgia. If they go on about sore tendons, muscles and fatigue - or even tender points and anxiety etc. - tell them these are long established recognised lupus symptoms.
Yes I will. When I was diagnosed, lupus was not even on the chart! I hoped that because of me, it would be a good starter for them. Concerns about MS were also thrown about in the consultation. But with covid, and her consultant working on the front line now, they have discharged her with no follow up. It's all about that elusive ANA. Our maternal cousin was told years ago that she may develop lupus. She is unwell now and they say fibro!!! I have fought my way to be diagnosed. Am gonna have to do it again for her.
Its an unacceptable fight that I'm all too familiar with. I've fought it with very positive SLE pathology markers. ( for 20 years I ended up under the care of a Rheumatogist - who unknown to me - was also a fibro researcher - and seemed so lovely empathetic caring and competent ) But as a nephrology proffessor who was familiar with this man's career said - (when I rocked up after a two year horror flare on the brink of renal failure -
" What, did he think it was anxiety" when I nodded - he said " yes,......he's a very illusive man"
Over the years with this Rheumatologist - rendered my SLE and who I was as a person of next to no consequence. Reading my medical record I'd just became a cluster of psychological problems that I didn't know I had - that had no bearing on reality. Real trauma/ psychological problems followed from this and now my trust in Doctors is near zero.
Fibro seems to be mis - used by Doctors out of self interest - whether it's just due to everyday lazyness - mixed with ignorance about lupus - or Doctors who believe themselves to have near psychic powers of psycholgical deduction about patients they don't even converse with. There's also more bigotry than you'd ever imagine on so many levels. They also have a terrible tendency to believe everything they're taught and told by any senior Doctor. For me Its been a perfect tool to render me hysterical and subject to medical bullying when ever I reported symptoms.
I have 20 years worth of a pile of this Rheumatologists letters saying " it's most likely anxiety " These had more impact than me being half dead, bed ridden - and essentially dying and begging for help. What angers me the most is the guise of profound caring for women's health that ( he ) some of if them ( hoping there a minority ) hide under when using fibro as an excuse not to help.
What amazed me the most is when I got rid of this Rheumatolgist - the problem just kept on keeping on. The bullying and invalidation was just re- phrased.
My life changed when I went to the Louise Cootes centre at St Toms London. Although I have had only 4 positive ANAs throughout, they didn't show on my early appts there. Some really severe lupus patients, have never had that 'magic' result in their blood work. But they did diagnose many other connective probs. My sister has been told that she doesn't need a referral, and it's fibro. It's so hard as I know what to say, and to be forceful. But if I speak for her, they assume that I am putting words in her mouth, being a lupus patient. She has so many other health issues, that I don't think a half hour chat, is adequate. I know how she feels. We all do on here. It's terrible how easy they throw these claims around. If I can get her to st Toms, we can be sure that whatever is wrong, it would have been properly looked into. Thanks for your reply x
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