I would just like some insight on if this sounds similar to anyone else’s experiences here.
I have had a range of issues, starting with severe weight loss and then erythema nodosum 2 years ago, since then I have been on this journey trying to figure out what is wrong as I experience a range of symptoms since that initial time falling ill 2 years ago.
I have severe joint pain, skin mottling, swollen knees and hands (especially after having eaten fried/salty things or drinking alcohol, which I avoid now) I have a round ring rash on my leg and elbow, which appeared when I initially got sick, I have mucus, my throat swells up, I get ulcers after eating certain foods which didn’t happen before, I get ulcers in my nose, I have a round tiny bald patch on back of head, my hands go red and white in the cold... the list goes on! And I have severe tiredness. I’m 28 and I lead a healthy lifestyle, love doing exercise and moving but this is getting in the way.
I’ve had lots of bloods the past 2 years as I’m sure all of you can relate to! My ESR has been really raised, then normal, then raised then normal, same with the ANA, only mildly raised twice.
I’m being seen by a rhuemotologist at the Kellegen centre in Manchester, who’s lovely but I feel so lost! She’s doing a ultrasound on my joints next to get some fluid to see why them are swelling and waiting for a skin biopsy on my rash.
I’m just so confused as the negative ANA and all my bloods are normal! Has this happened to anyone else or am I barking up the wrong tree? She’s mentioned discoid lupus to me a few times but needs these results from skin/fluid.
Thanks for reading! And hope someone can shed some light...
I’ve attached a photo of my rash on my leg which is always there, it’s not itchy just so big and raised. This is why she thinks it could be discoid lupus. Today it’s not red but when I’m all achey it goes bright red and almost purple, weird!
Thanks so much in advance xxx
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Cazza_dow
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Oh, it is understandable you would feel lost Chazza. My take would be you are in the hands of an expert who is seeing your labs in context. Your ANA has been low positive but you have swollen joints, a suspicious rash and ulcers.
Try not to focus on the diagnostic testing. You are in good hands. I imagine you will be watched carefully if she cannot make a definitive diagnosis at this time. This is not uncommon.
Others here will likely have similar experiences and help out.
I just received the letter through the post with this, and every time I feel closer to a diagnosis I’m knocked back by the ANA being negative/them not understanding why I’m having this host of symptoms.
It does feel like a nightmare at times like the body I had has been taken away, and no one knows why, being so achey and having to go down to part time work at 28 isn’t a vibe! Haha.
Thank you so much for your reply, and I hope you’re well!
Weight loss, skin involvement, joint aches and pains are all symptoms associated with lupus. Oral/nasal ulcers are common in people with lupus, occurring in around 45% of people who have SLE. We published a blog article on coping with oral and nasal ulcers which you can read at lupusuk.org.uk/coping-with-...
Some people with lupus find that eating certain foods or drinking certain drinks can cause them to experience a flare - a flare is when lupus symptoms become more intense. You may like to read our blog article on lupus, healthy living and diet at lupusuk.org.uk/diet-and-hea...
Have you heard of Raynaud’s?
In people who have Raynaud’s, the small blood vessels in the extremities are over-sensitive to changes in temperature. This causes a Raynaud’s attack where the fingers sometimes change colour (but not always) from white to blue, to red. Sometimes the fingers may become painful or have a tingling sensation during the event. Symptoms of a Raynaud’s attack can last from a few minutes to several hours. We published a blog article on ‘Coping with Raynaud’s Phenomenon’ which you can read here: lupusuk.org.uk/coping-with-...
An ANA test only confirms whether or not a person has an autoimmune disorder, it does not confirm if a person has lupus. dsDNA antibodies are very specific for lupus (as they are not typically seen in any other condition or in healthy population) only approximately 60% of people with SLE will test ‘positive’. Therefore if someone is positive for these antibodies, it often means they have lupus, but if they are negative it does not necessarily mean they do not have lupus. For more information, you can read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...
Hey Cazza- Personly (although I am obviously not a medical practitioner!) I think you are "there" already ie I keep reading one only needs to have positive ANA once to be used as a pointer to do further testing. So you have that.... and your specialists will (surely) know that that is enough, along with all your obvious other tests and symptoms? I just googled and found this...but there are tons of similar on the net from reputable sources. hss.edu/conditions_does-ana... I also joined mdedge.comas there are some great articles on there. I think you'd need to join (it's free) so I've copied and paste two that might be of interest:
New SLE disease activity measure beats SLEDAI-2K
Publish date: January 31, 2019
By
Andrew D. Bowser
FROM ANNALS OF THE RHEUMATIC DISEASES
A new instrument for measuring disease activity in systemic lupus erythematosus had better performance than that of the current most widely-used measure, according to investigators.
screen shot of lupus erythematosus definition
enot-poloskun/iStock/Getty Images Plus
In terms of identifying clinically significant changes, the Systemic Lupus Erythematosus Disease Activity Score (SLE-DAS) was superior to the SLE Disease Activity Index 2000 (SLEDAI-2K), said the authors of a longitudinal cohort study comparing the two instruments.
The SLE-DAS maintained high specificity compared with the SLEDAI-2K and had a similar clinical workup time requirement, according to Diogo Jesus, MD, of the rheumatology department at Centro Hospitalar e Universitário de Coimbra, Portugal, and his colleagues.
“Such a performance can have major implications in the interpretation of clinical trials applying the disease activity as the primary endpoint, and in daily clinical practice, where SLE-DAS could provide robust guidance for treatment in the individual patient,” Dr. Jesus and his coauthors wrote in Annals of the Rheumatic Diseases.
The longitudinal cohort study by Dr. Jesus and his colleagues included 520 patients with SLE from tertiary care centers in Coimbra, Portugal, and Padova, Italy. These included a derivation cohort of 324 patients and an external validation cohort of 196 patients (the Padova Lupus Cohort).
A cutoff value of 1.72 for change in the 17-item SLE-DAS had significantly higher sensitivities to detect a clinical meaningful improvement in both the derivation (82.1%) and external validation (89.5%) cohorts, compared with a cutoff value of 4 or higher in the SLEDAI-2K at 44.8% and 47.4%, respectively, the investigators reported. Likewise, ability to detect clinically meaningful worsening was significantly higher with SLE-DAS, with sensitivities of 93.1% in the derivation cohort and 95.5% in the external validation group versus a respective 46.6% and 59.1% for SLEDAI-2K. Both clinical improvement and worsening were defined by a change in the Physician Global Assessment score of 0.3 or more.
Specificity was high for both instruments, with values around 98%-99% in both cohorts for clinically meaningful worsening and about 97%-100% for clinically meaningful improvement, the report shows.
Further analyses showed that disease activity tracked over time with SLE-DAS had a higher predictive value for damage accrual versus the SLEDAI-2K, according to the investigators.
The SLE-DAS formula, published in the journal by Dr. Jesus and his colleagues, includes a total of 17 weighted and mostly binary variables: presence or absence of alopecia, arthritis, cardiac/pulmonary involvement, generalized cutaneous rash, hemolytic anemia, hypocomplementemia, increased anti-dsDNA levels, leukopenia, localized cutaneous rash, mucocutaneous vasculitis, mucosal ulcers, myositis, neuropsychiatric involvement, proteinuria, serositis, systemic vasculitis, and thrombocytopenia.
Next, the researchers plan to define SLE-DAS cutoff values for remission, low disease activity, and moderate or high disease activity. An online calculator is also in the works, they said.
Dr. Jesus and his coauthors did not report any outside funding for the study and said they had no competing interests related to their research.
SOURCE: Jesus D et al. Ann Rheum Dis. 2019 Jan 9. doi: 10.1136/annrheumdis-2018-214502.
and..................:
Conference Coverage
New findings raise questions about the role of ANAs in SLE
Publish date: February 7, 2019
By
Sharon Worcester
EXPERT ANALYSIS FROM THE WINTER RHEUMATOLOGY SYMPOSIUM
Antinuclear antibodies (ANAs) have long been considered an important marker in rheumatologic conditions, particularly for the diagnosis and classification of patients with systemic lupus erythematosus, but recent findings are raising new questions about their role.
Dr. David Pisetsky of Duke University, Durham, NC
Dr. David S. Pisetsky
“We’ve measured ANAs for a long time – it’s a very important test in rheumatology,” David S. Pisetsky, MD, PhD, explained in an interview.
However, even though this test has been around for decades, “some interesting things have developed around it that have made a lot of people, including me, take a second look,” said Dr. Pisetsky, professor of medicine and immunology at Duke University, Durham, N.C.
He elaborated on those recent findings, which relate to the findings of ANA negativity in patients with an established diagnosis of systemic lupus erythematosus (SLE) and to variability among ANA test kit findings, during a presentation at the Winter Rheumatology Symposium sponsored by the American College of Rheumatology.
“Screening of patients during clinical trials for new treatments of SLE suggest that a significant number of people with lupus – 20%-30%, in fact – are ANA negative despite disease activity at the time the test is done,” he said.
For example, unpublished (but recently submitted) data from a phase 2 trial looking at the efficacy and safety of an interleukin-6 monoclonal antibody for the treatment of SLE showed that 23.8% of baseline samples from 183 SLE patients with positive historical ANA and clinically active lupus prior to randomization were ANA negative.
A particular concern with respect to such findings is that ANA positivity is typically a criterion for entry into clinical trials of therapies for lupus and prescription of medications approved for active lupus, Dr. Pisetsky said.
“On the other hand, about 20% of otherwise healthy people – especially women – can be ANA positive, so it’s always been problematic as a screening test due to these false positives, but these new findings suggest that in lupus a real concern is false negatives,” he said. “It’s quite a surprise.”
The findings raise questions about whether ANA negativity in SLE reflects the natural history of the disease, an effect of treatments, or a problem with the assays.
It appears an important problem relates to test kit variability, he said.
“There are lots of different ANA test kits. Their performance characteristics are very different. The performance of ANA tests is much more variable than people realize,” he said, citing data from an analysis that he and his colleagues conducted using 103 samples from a cohort of patients with established SLE.
In that 2017 study, an ANA enzyme-linked immunosorbent assay showed an ANA-negativity rate of 11.7% with zero indeterminate tests, whereas three different test kits showed ANA-negativity rates of 22.3% (with 8.7% of samples reported as indeterminate), 9.7% (with another 9.7% indeterminate), and 4.9% (with another 1.9% indeterminate), respectively. Multiplex testing showed a 13.6% ANA-negativity rate and an indeterminate rate of 7.8% (Ann Rheum Dis. 2018;77:911-3).
Only one sample tested negative for ANA on all three test kits, and disagreement about ANA negativity occurred in one-third of the samples, he said.
EXPERT ANALYSIS FROM THE WINTER RHEUMATOLOGY SYMPOSIUM
Anti–double-stranded DNA assays
Recent findings also raise questions about the use of assays that specifically assess for anti–double-stranded DNA (anti-dsDNA) antibodies, which are highly associated with SLE and have been used as a biomarker for the disease, Dr. Pisetsky said.
For example, a comparison of two anti-dsDNA assays showed discordant results with respect to negativity for anti-dsDNA antibodies in 64 of 181 samples from SLE patients. One assay showed a 70.7% rate of anti-dsDNA negativity and the other showed a 37.6% rate.
The concern regarding test variability relates to the issue of ANA positivity and eligibility for study enrollment and certain treatments; test variability can affect the diagnosis of patients with SLE because ANA positivity is an important finding in routine clinical care, and for anti-dsDNA, test variability can affect assessment of disease activity, he explained.
Tests may differ in a number of ways, such as in their specificity, sensitivity, avidity, and range of epitopes detected. Unfortunately, not enough is known at this point to make specific recommendations regarding best test kits, and while there are alternative technologies that could be useful for ANA testing, none has been validated for particular use in the assessment of trial eligibility, Dr. Pisetsky said.
Nonetheless, awareness of the test variability is important, especially when it comes to assessing patients for trial eligibility and prescribing medications, he added. “For practical, real-world utilization, people need to know about this.”
Dr. Pisetsky reported receiving ANA-related research support from Pfizer, conducting collaborative research with Bio-Rad and EuroImmun, and serving as an adviser to ImmunArray.
sworcester@mdedge.com
I can see Chanpreet from Lupus UK has just written to you and that would have been my recommendation ie contact them as they will help enormously at this confusing time for you. All the best. D
Hi, I have just had lots of blood work done as I have many rashes, very similar to yours. Sometimes they are pale other days very red. ANA was negative but lupus anticoagulant is abnormal. Waiting to speak to the doctor to find out what happens next.
After much googling, its very confusing. Hope you get some answers soon.
I have positive ANA all my life have all the symptoms got a positive diagnosis from two different drs from two different hospitals in two different trusts then treated for at least 5 years for political reasons I was told I don't have lupus. they stopped my meds then two years later I had symptoms for Bronchiectasis because of untreated Lupus. my lungs can't clear themselves and its a nuisance. to say I am not impressed is an understatement..even someone on here says I dont have lupus either. if you can go private to much politics
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