An interesting link for those with se... - The Australian Sj...
An interesting link for those with seronegative Sjögren’s
That was interesting TT - Thanks - It might explain why I still hurt so much even in RA remission (of course the fatigue does not seem to every change or go anywhere... dang it).
The question I had when I read this article a few months back: is the seronegative state such as they describe, a permanent state? That is until the person dies?
Take my case and plenty of other SjS people, for example. My first symptom at presentation of this constellation of symptoms (Sjögren's Syndrome) was peripheral neuropathy as in prickling/burning/freezing/electric buzzing sensations in the legs and other patchy areas. At that time and for several years afterwards I was seronegative. However eight years after the start of all of this I eventually tested positive.
So in that study I wonder whether the seronegative status was declared to be a fact early or late in the disease course? Were these study participants die-hard 'never to become seropositive' or had the researchers just not let enough years elapse before writing up the study on patients with peripheral neuropathy?
Is my question as clear as mud? I'm tired as it's late! That's my excuse. Hehe.
Good question! The Sjögren’s rheum I saw privately last year doubted my seronegative status and said she’d like to have seen the ENA panel results for herself. I asked her if our status can change and she said that until last year she’d have said no - but a couple of her patients had recently disproved this theory.
This John Hopkins article I posted refers to seronegative as an older group so I’m guessing that if they are two distinct pathogenesis’s - maybe you just have features of both?
My rheumatoid factor was a low positive for 2 years but is now negative where my ANA has become significantly positive. But then it wasn’t actually ever tested prior to taking meds for RA so perhaps five years of DMARDs sent it from it’s ususl positive to negative/ inconclusive. Increasingly I seem to be a person who’s overactive immune system badly needs suppressing and this is one of the many signs I feel.
I tend to think seronegativity is worse for all these diseases. It’s so slippery, much harder to diagnose and treat and doesn’t meet the criteria for trials therefore we have no idea how treatments might affect it.
This was certainly what the famous professor of immunology and rheumatology who heads the EU research centre for rheumatic diseases told us all at an RA conference recently. He specialises in Psoriatic Arthritis - which is almost always seronegative - so I guess he sees the worst cases of a bad seronegative rheumatic disease and this has shaped his thinking?
Two things particularly relating to the latter part of your message.
1). Perhaps they haven’t yet ‘formulated’ the right test/s to elicit these disease antibodies. Hopefully researchers are still working on improving testing for specific immune conditions.
2). Also, it's good that these top people are recognising the slippery nature of seronegativity when faced with all the presenting symptomology of the patient. However this recognition needs to filter down to the GP and ordinary Rheumatologist who often declare that xx person does NOT have xx autoimmune disease because their blood markers are negative.
All vety interesting.
That's meant to be ‘very’ not vety!!
I couldn’t agree with your points more Megansheart. Also I get very steamed about the idea that, with Sjögren’s, seronegativity still involves histological confirmation from a lip biopsy - quite an invasive and daunting prospect. Only then to be told that you are still seronegative and therefore won’t qualify for any clinical trials, can’t be put on the Sjögren’s registry or be offered drugs such as Rituximab? It honestly feels like the cast system to me, with us as untouchables!
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