I’m here hopefully for some advice as I don’t really know where to turn at this point, I’m sort of sick of trying to figure out what’s wrong with me myself.
I’ve been under investigation for Lupus, had a blood test at GP and was nagative for ANA, but was referred to rheumatologist anyway.
The rheumatologist did another bunch of blood tests and I have to have one of them repeated in three months to confirm sticky blood (antiphospholipid syndrome (APS)). APS does explain a fair few of my symptoms, but not my face. I wasn’t sure if I was just imagining my butterfly rash after reading about Lupus, but when I saw the rheumatologist and listed my symptoms, he pointed at my face and said ‘and your face’ even though I’d forgotten to mention it.
So I think my question is: is it possible to have OK blood tests sometimes even if you do have Lupus? Do blood test results vary depending on flare ups? Or do I definitely not have Lupus?
I’ve read a lot of stuff where people have said it takes years to get a diagnosis, is that because it takes years to get someone to test for it, or is it because it might not show up on first blood tests?
I already have confirmed Type 1 diabetes, Reynauds and Hashimotos, possibly APS, and there’s a fair bit of other auto immune stuff in my family.
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first time my bloods were negative, then tested a few years later and it was positive, I’ve never really thought about it but I had pancreatitis when I was diagnosed with lupus so maybe it’s possible that was why lupus showed up in the blood test.
I think people are finding it depends on wherever we go. A rheumy at my local NHS said I did not have a systemic autoimmune disease as I walked in through the door. (I had a mask on so they were not concerned to look at my face, or discuss symptoms, before they said this.)
In the past a set of 11 symptoms was referred to, but some of us are finding this is not seeming to be being used by local rheumies we are referred to, and that maybe some look for specific blood tests being positive before considering symptoms, diagnosing or adding someone to their caseload (using 2019 EULAR/ ACR Criteria intended for use in research only. Here only one symptom is scored on the left of the table. If the patient has not got 10 marks for that, an immunological test result on the right side of the table needs to make it up to 10. So it hard if we see rheumies that insist on using the table)
It is great news that your rheumatologist is diagnosing based on symptoms also, like in the 'pre 2019 criteria' days.🙂
That is what many of us have been calling for, only because we have found the situation different with our local NHS.
Maybe things are changing.
I feel too that some things might be picking up again after the pandemic and that higher standards and more comprehensive care are evidenced ..hoping this anyway🙏
Hi,I haven't posted on here before but I have been following the posts for the past few years and like everyone else ,have found them a great source of help. Do you know if Rhumatology are using the criteria table you linked? and do they have to follow it? Thanks
The first rheumatologist I saw, after GP had done ANA (strong and positive) and ENA (negative) said I did not have a systemic autoimmune disease as I walked in. This must have been because of blood results. He had not discussed symptoms or examined me.
Then I find others here with the same sort of blood results whose GPs are hesitant to refer or they experience the same thing when they go to local rheumatology.
I have since watched videos by top British Rheumatologists saying (i) blood tests can't be relied on. Different centres use different methods, some more reliable. Cut-offs also vary. (ii) That these 2019 CLASIFICATION criteria are intended for research, not for diagnosis.
Research done recently for NPSLE paper said anti-ds DNA could not be relied on to indicate NPSLE, yet some of us newbies are told we don’t have SLE because it and other bloods are not positive. There is a lack of consistency depending on when people are diagnosed. Some also might get treatment stopped if bloods reverse I have been told. Which is dreadful. Where have the sero-negative cases gone since 2019. Not heard of one on this forum.
Lots of us are being diagnosed with Undifferentiated Connective Tissue Disease (UCTD) though. Research could see how numbers of diagnoses have changed.
UCTD though is very broad, some like me relate to Lupus more than Sjogrens on Systemic Sclerosis, because of our clear symptoms that once where rated using a more than '4 out of 11 symptoms' system for diagnosing SLE.
Not heard of the system being in use now, but it is still referred to as being used in some patient literature. It is a bit confusing then when patients see a rheumy who dismisses them.
I don't work in the field but believe research should take place across rheumatology departments the length and breadth of the UK to find out what is truely happening. How many UCTD patients do they have might be a good question to ask..is it nil (which might be the case at my local NHS hospital) or is it similar to or even more than, the number of SLE patients as one might expect.
Sorry I can't help you more.
I needed to go private (without insurance) to ensure I could on hydroxychloroquine to prevent my many symptoms and prevent future organ damage. Symptoms much much improved within six months as I expected they would. Excellent rheumatologist - truely outstanding and very clever, and can trust them fully unlike the first one who I thought was dreadful.
I did not want to be told it was all in my head a second time by going to another local NHS hospital, when for months I was getting ridiculous symptoms. Blood in my urine, that I could see, white blood cells but no infection, kidney pain for months, unable to urinate, swollen joints, sweating on and off all day, glands up, butterfly and other rashes, photosensitivity, terrible headaches and other neurological symptoms, the list goes on and on. I would sit on the loo trying to pass urine and would reflect on the poor consultant who had the audacity to suggest it was all in my head.
I can only guess it was used to control caseload. Goodness knows why they got away with saying it. This is the NHS failing people really for not picking up on it, and changing practice and behaviour, even if you provide feedback on the appointment using their feedback questionnaire.
Appalling.
The NHS Centres of Excellence may offer more comprehensive care, but they are too far away for me and many others to get to, particularly when unwell and nobody to travel with..could end up in A&E instead.
I think practice varies from department to department and there is not oversight across the country or an official diagnostic standard.
So then the decision is left to individuals and departments, who have different interests and constraints, instead of using a generally accepted best practice. There is an assumption that everyone will then make a good job of it all but maybe some don't.
Thank you for your response, I was diagnosed at a centre of excellence 2 years ago with strong ANA and positive dsdna ,also symptoms. Hydroxychloroquine and occasional steroids have given me back my life and controlled my symptoms well.Unfortunately I am at threat of being one of those people whose medication is removed (despite a recent flare).and am feeling completely overwhelmed .I cannot get my head around how criteria can be so open to interpretation. People's lives are being destroyed and we are helplessly at their mercy.I am currently gathering myself and trying to find the best way forward to ensure continued care.many thanks again.
Yes it is at a centre of excellence and I counted myself very fortunate to be taken on when my condition was deemed urgent and immediately started on steroids and hydroxychloroquine 2 yrs ago. Unfortunately my original and lupus spcialist rhumatologist left, although a year ago a different and very expert rhumatologist at the same centre took me on and my diagnosis was reaffirmed. Recently however there appears to have been a shift in department focus probably due to widespread problems and pressure within the NHS and no doubt with directives from above .All of that is sad but doesn't help me and the last correspondence has shocked and broken me .I have been very taken with the reviews of dr Kaul and would count myself very fortunate if I could be assessed by him . He is someone i have previously researched ,I'm not sure how straightforward that would now be though.?Thank you for the video clip,I do/have had some symptoms in that direction but apparently my kidney function is normal
and a specialist ctd dermatologist put my facial oedema and malar down to my CTD
Thank you again for your response, I really appreciate having the opportunity to talk with someone who understands.
hi Dolly, my conclusion from my own experience and reading around the condition for 20+ years to try to understand what’s going on with myself (so I understand your frustration) is that it’s a mistake to rely on blood test results alone as so often they are a just snapshot of what’s going on at the time the blood was taken. Sadly there is no test that can conclusively rule the condition in or out. My blood tests are all over the place and don’t always coincide with flares. My ANA has been both positive and negative. As diagnosis is made via combination of symptoms, clinical signs and investigations it can take a long time to get a diagnosis because there are so many overlaps with other conditions - lupus used to be called ‘the great imitator’. autoimmune disorders tend to present with multiple signs and symptoms and different medics put the puzzle pieces together in different ways and arrive at different pictures. I was sent down the multiple sclerosis route at one point. To make matters worse, these days we are limited to one problem per GP appointment so symptoms are treated in isolation. And you say you’re already coping with other conditions - that’s got to complicate matters. Truth is that lupus is not a cut & dried situation. I had terrible health anxiety for a few years because I wanted to know what was going on and felt as though I was being passed from pillar to post but not getting anywhere and not being told anything I could work with and every abnormal blood test made me worry. Thankfully I’ve calmed down because I’m sure the stress of it all was creating a downward spiral that made symptoms worse. I tell you all this just to let you know that I understand something of how you may be feeling and to try to reassure you about the blood test angle. I think it’s the uncertainty that is sometimes hardest to deal with. Sending love, hope you’re able to regain your equanimity x
The best way to answer it is they look for a constellation of symptoms. You sound so much like me.
If you had no systemic symptoms but had had miscarriages, you might be diagnosed with APS. Sounds like you were sent to the rheumatologist for systemic issues. I wonder if some labs were off also and that is why the GP wanted a rheumatologist to see you. Good thing he did.
You may be in a difficult category without a positive ANA but that won’t rattle the rheumatologist. They see this all the time. He knows now you have an antibody that was originally only seen in lupus patients and still is characteristic of the disease.
The fact that he noticed your rash means it is likely a clear butterfly rash. My rheumatologist laughed at me when I showed him a red flushed face that to him was clearly not a lupus rash. Says I can’t imagine how often he sees rashes that aren’t lupus. I did have one classic one during a flare, though. My point is the rheumatologist can tell. And if they can’t, they send you to a dermatologist.
Do you mind telling us your other symptoms?
I know you must be so frustrated with this long process. We are both fortunate to have had someone do extensive testing. They could have stopped at our negative ANAs.
By the way, my ANA was positive after five years.
I have thyroiditis and the APS antibodies. We are so much alike.
Hi Dolly, the short answer is yes and yes! It takes ages to get tested, and it takes a while for stuff to show up on bloods. Plus symptoms fluctuate, so it’s hard to know if they are a one-off or an ongoing thing. Autoimmune stuff is changeable and hard to pin down by nature—which I’m sure you already know!
It’s possible to get false negatives with bloods (as well as false positives) which is why a good rheumy will retest several times to confirm a diagnosis. But my first round of bloods, even though positive, wasn’t enough to diagnose me. I ended up getting a second opinion, and that’s when I got diagnosed. I also have positive antibodies for anticardiolipins, part of the antiphospholipid family. So I understand where you’re coming from. Diagnosis took me 8 years—average time for lupus diagnosis is 5 years.
Please hang in there, it’s worth it. And we’re here for you, so you’re not alone. Please keep us posted x
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