I haven't been online for some times, perhaps years. I don't think I have posted since losing my Mum in August 2021 and then I lost my Dad last year June. My health, not surprisingly, has been all over the place and under the following hospital departments: Lupus Rheumatology, General Rheumatology - Podiatry and General Respiratory. My GP made an urgent referral in August 2023 to General Gastroenterology, I've not been seen and last week General Respiratory made a referral to ENT.
In 2018, I was diagnosed with Lupus in October. At my last Lupus Rheumatology appointment in January 2024, I was told by the Consultant I did not have Lupus and in his letter to my GP and myself he wrote the following:
'She does not meet the classification criteria for systemic lupus erythematosus though she does have positive antinuclear antibody titrer anging from 1 in 1280 to 1 in 320. She has an anti-Ro antibody and I understand she has had significant hair loss and a scalp biopsy at the (XX Hospital) did apparently suggest some lupus features. She does not however have anti-dsDNA antibodies antiphospholipid antibodies and has a normal complement C3 level.'
Can anyone explain the above because it means nothing to me? Does anyone else have similar bloods without the specifics in the last sentence? I get the feeling that if you don't have organ involvement with SLE, which thankful I never had, anything else is really not taken very seriously. Interestingly he does not say what autoimmune condition he thinks I have.
He said the joint pain with erosion of bone in my feet are not Lupus related but gout (although bloods not suggestive of this) and/or osteoarthritis. He ordered x-rays of my knees and left shoulder which show mild - moderate changes to joints and in some places moderate to severe . The results are too long and detailed to put into this post. I also have pain in my wrists, hands and hips, which have not been x-rayed. I would like a full body scan and I'm going to ask for this in April at my next Lupus Rhuemataology appointment. I just want to know what muscular skeleton changes are going on in my body. I stopped taking hydroxychloroquine in January after my appointment. I found Predisolone helped with joint pain but Rheumatology advice was I should not take it for long periods because of the known side effects.
I would appreciate any information from people who will have been in the same or very similar situation.
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In 2019 EULAR /ACR produced a classification criteria for SLE. Classification criteria are intended for research and not diagnosis.
A positive ANA is an entry criterion, then only the highest scoring symptom, from the left hand column, and highest scoring blood test result from the right are scored.
This might explain why some of us are now finding it impossible to be treated by our local NHS hospital although we have numerous SLE symptoms. (Without the right bloods, it has to affect our kidneys badly first to get the crucial minimal score of 10.)
Using the 2019 criteria in this way can reduce caseloads. Possibly it is their management that set rules, across departments, on criteria used to define who is seen. They could lack the knowledge that 'SLE and other classification criteria' are intended for research only or chose to ignore it. 🤭(If you Google, you will find other related conditions also have classification criteria. These might determine whether sero-negative diagnoses are still made for each) 🤔
In the past, for SLE, they would have used the 'more than 4 of 11 symptoms' system. Seronegative not being an issue if tally amounted to four or more.
👩🔬🧪🔬Also, the 2019 classification criteria standard is limiting the breadth of research. Although the organisations that put it in place don't seem worried about this. This is my take and as a scientist I despair because the bigger picture and opportunities to understand the wider complexity of the 'SLE disease spectrum' are missed
🌎We live maybe in strange times where incentives have changed. No new diagnostic criteria - it is left to individuals and departments to decide on who they diagnose.
🙄One Rheumy said my GP needed to refer to numerous other departments other than rheumatology because I did not have systemic autoimmune disease. He made this assumption as I walked in based on the bloods my GP did.
I have been pushed from pillar to post in referrals not being accepted, pushed elsewhere, and then only very narrow pathways used - with cheaper drug and other outcomes etc.
But back to 'Connective Tissue Disease' - I went elsewhere and my symptoms disappeared on antimalarials and short courses of steroid.
Fortunately I have not had to wait for my early kidney issues to worsen to get help by those relying on 2019 research classification criteria for something other than for what it was intended.
I have been diagnosed with UCTD, which I believe not all rheumatology departments list specifically on their CTD webpage.
What does this say?
I am praying for an update of 2019 criteria, and 'more comprehensive clinical pathways' for looking after CTD patients, to happen ASAP.🙏
Thank you for your very comprehensive response. I was unaware of the 2019 research classification criteria and it is a shame for us that it is being used in this way. I suppose I will have to keep battling on. I wait to see if Rheumatology Lupus try to close my file down at my next visit I April despite my symptoms. So sure was the consultant that he had it right I did not even have my normal monitoring bloods. It's all very dire. My respiratory consultant told me last week, "The NHS is broken", I replied "So is my body.2 He laughed.
Hello KUB In order for a rheumy to diagnose Lupus they have to identify BOTH the physical symptoms i.e. hair loss, rash, etc. and also to find the appropriate indicators in a blood test.
The key indicators for Lupus are high anti dsDNA antibodies along with low compliment C3 & C4. You do not have these indicators hence they have concluded that you do not have Lupus. Having said that you clearly do have a medical problem that does need to be identified and treated.
I am not a medic but my wife does have both Lupus and RA. From the symptoms you describe I wonder whether you may have RA which does cause very painful joints especially if the pains are symmetrical i.e. you get pain in both sides of the body e.g. both wrists, both knees, both elbows etc.
You say that you stopped taking hydroxy. --- this is a medicine that is good for both lupus and RA. Perhaps it was controlling the RA and that is now having free reign as there is no medicine controlling it.
Just a couple of thoughts from an interested observer. Hoping this helps --just a little. Keep up the fight!!!
Thank you for you response. I only stopped taking the hydroxychloroquine after my last Rheumatology appointment in January 2024. The consultant agreed to me stopping this medication. He did not order my monitoring bloods so I wait to see in April what he suggests next after reviewing the x-rays and talking to me about my symptoms. S what you are saying is without 'high anti dsDNA and low compliment C3 and C4' it is not possible to have Lupus? Presumably, he does not think are have RA otherwise he would have mentioned this. He just kept on about osteoarthritis. Always keep up the fight, anything else is unthinkable.
Hi there. There is nothing much I can add to what hasn’t been said already about the diagnosing criteria, except to say I have been diagnosed then undiagnosed with Lupus since 2009. Then re diagnosed and undiagnosed now there is uncertainty again. Whatever the label you are very unwell, in pain and need help. I am so very sorry for your losses, you have had such a hard few years, it is no wonder that your health has worsened. AI diseases hate stress and when you feel at your lowest they will hit you hard.
You must be feeling anxious and stressed now so be kind to yourself. This wonderful group is so good for information sharing but we are all able to understand the frustration and despair of the diagnostic criteria and the often inept way it is applied. Sending you a huge cwtch and hoping things improve fir you xx
It would be good to have statistics on the percentage of patients being affected byyoyoing back and forth like with 'Lupus' and then 'not Lupus', decisions.
It could be highly informative, increase visibility of what is happening, and prompt more serious consideration by those defining patient care, particularly in conditions where 😟 stress makes things so much worse.
Oh wouldn’t that be so informative. Honestly being diagnosed feeling catastrophic initially, then you get your head around it and start learning to live with it and boom you haven’t got it but you have something else you have never heard of like Bechets, UCTD. I do not think the medical profession clearly comprehend the emotional impact and distressed caused by this. I thank God my current Rheumatologist got it immediately and started treating my symptoms. I know others are not as fortunate. It is a Shane we could not clone him xxx
Thank you CP, for your kind and comforting words. I definitely agree with StriatedCaracara, there is a need for some research on patients who seem to the experts not it fit the classification criteria yet have terrible debilitating symptoms that impact on quality of their lives. I try to remain as active as I can and I still work part time. I hope that in time my many symptoms will be stable allowing me to do more than just work and rest.
Hi KUB. Very cute name. You have received a lot of details so I’m going to keep mine short. I’m in the US. I traveled to a very well known hospital in 2019 because I wanted a second opinion on my diagnosis of Lupus. The rheumatologist was a woman. Perhaps the rudest I’ve encountered. She did all new bloods and a physical exam. She used some more sophisticated as she said diagnostics for my bloodwork. My ds DNA came back a clear positive as did my ANA. My dsDNA had not been “captured “ as I call it, yet by my local rheumatologist. She said I did not have lupus because I had no major organ involvement. !&@)!!! Upon returning to my local rheumatologist he just chuckled and said,”I’m trying to keep you from major organ involvement!” Everyone presents differently. !!!! My scalp biopsy was one of the deciding factors for diagnosis. I’m not suggesting anything except to help you understand that to get a correct diagnosis lupus or otherwise; you may have to work for it and it shouldn’t be that way. But,there it is.
I hear you, but you know after battling for to parents with multiple health condition under three and four hospital and a dialysis unit. I've kind of run out of battery and I'm on a slow charge but I'll get there. I certainly will continue to 'work for it', I think I'm trying to arm myself with as much information as I can and this is the site to do so. 'We', live it day in day out and we have empathy for each other because 'We' walk that walk and know what we go through.
KeepingUpBeat with you all the way and this has been a great post. 💯🌸💐
Trying now to have equal honesty and some is along same lines maybe.
My dad died 2020, then I cared for my mum.
Symptoms started 2019 when my dad was really poorly, I was making so many 999 calls, and there were so many hospital stays, where we sat up all night, next to my dad ensuring he had the right help.
After my dad passed away, had little help looking after my mum during the pandemic, even ended up writing her Care Needs Assessment, correcting what the social worker wrote.
At the same time got little from my own hospital referrals. So many symptoms, it was left to me to ask my GP surgery for ANA test when it was clear I had not infections, but that my immune system was not right.
Found a consultant myself in the end using this forum, after local NHS rheumy said symptoms were in my head.
Appauled and not afraid to say it here.
This forum and YouTube videos, many intended for medical students, have helped me understand symptoms and know where to head to a large extent.
Given up expecting much from local NHS hospital unless it was an emergency.
Even then we need others to be there sometimes to ensure things stay on track.
With my mum last year everything recorded as age related after staying the night in A&E ward, which seemed to equate to junior doctors giving painkillers and anti-emetics to elderly patients around us, did not witness much else happen. All of this could have happened at home.
(Feel that in some areas things are getting more streamlined and sensible though now so there is hope maybe).
Experiences vary depending on where in the world, and in the country, we are. Whether we have health insurance or not, whether we can afford private care and drugs that are not prescribed by GPs using different protocols. Even, dare I say it, whether we work in a hospital and have friends who are rheumatologists or can do extra bloods so we get more chance of the right tests being done, to get crucial specific antibody positive results ..yes I'm sure it happens..the list goes on.
People's journeys, and the obstacles faced vary. Some have a harder journey, than others. This is part of the dilemma too.
Hoping in the future best practice is shared, that does not have boundaries on who receives proper care.
Also that only the best, most caring doctors oversee standards used. They need to be clever and honest and have the ability to go against principles that are obviously wrong.
Other points that would be good to take on board and publish in standards are:
1. Not everyone gets raised ESR when they have inflammation. Medical textbooks are saying they do, so textbooks are wrong and doctors can say we have no inflammation without investigating further.
2. UCTD does not require a positive anti-RNP result. Again some are probably reducing caseloads by insisting on it.
If rheumatologists are now relying so heavily on test results it means that diagnosis appointments don't need to be so long. Symptoms then become important only once diagnosis is made and symptoms are treated.
This is wrong, symptoms need to be reviewed at the initial appointment as they were over decades past.
Good rheumatologists do this still. To some of us I guess it is evident some are now cutting corners
I was told I had not systemic autoimmune disease as I walked in the room, when all they had were blood results nothing else.
When I asked about UCTD, I was told even UCTD had a positive antibody, and look, even my ESR was not raised much.
If standards don't require vigilance and attention to truth, then a pressurised system can fall into bad habits. This is being allowed, and probably rewarded, because even reward systems are probably being set up incorrectly. Patient feedback if more specific, and gathered and used fully, would also help.
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