More questions regarding lip biopsy result and pathogenisis of pSS

[MAT51]

Can anyone here explain to me what the likely pathogenisis of Sjögren's is if a sufferer has relatively manageable sicca, but an apparently quite progressive neuropathy - i.e SFN, Dysmotility, BMS, ganglionopathy?

Someone on closed a FB SS group said that the severity and pathogenisis is determined by the destructiveness off the sicca and suggested that lip biopsy results are unreliable and so are antibodies, and it's the sicca that determines whether or not Sjögren's is the most active and destructive disease- or perhaps another related AI disease is the culprit for symptoms. He pointed out that lip biopsies etc can be positive with Lupus and RA. But this person has no bloods or positive lip biopsy for SS although he does have severe Sicca, Raynauds etc.

As some of you know I was previously diagnosed with RA but then, as it proved non erosive, was rediagnosed last year with Sjogrens - which was almost certainly mimicking RA.

I'm seeing a Sjogren's expert for a one-off consultation soon and will, of course, be asking her - but meanwhile it would be interesting to learn what others understand by my lip biopsy lab report from last year - which I paste below.

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4 x minor salivary glands from lower lip

Clinical Information Supplied
Rheumatoid Arthritis. Dry mouth and eyes. ?Sjogren's

Macro Report
The specimen comprised four fragments of yellow brown tissue measuring up to 3mm in maximum dimension
(Kern)

Micro Report
The sections show five lobules of minor salivary gland tissue in which there are foci where more than 50 lymphocytes are present within the minor salivary gland tissue. In addition scattered plasma cells and small groups of plasma cells are also apparent.

Assuming that these biopsy specimens have been derived from below clinically normal mucosa and non-specific sialadenitis is excluded, the present appearances fulfil Chisholm's criteria for features consistent with a background of Sjogren's Syndrome

Further clinics-pathological correlation with thus possibility in mind, in particular appropriate serological investigations would now be advised.

Signature of pathologist (s)

[anita]

First...what is a 'closed' FB SS group?  Does this mean that you have to have some sort of approval in order to be accepted in the Facebook group?  Are they doctors?  If not, then how do they decide how to accept someone?

As far as sicca goes and whether it is the defining pathogenisis for a Sjogren's Dx...I don't believe it.  Sicca is just a condition of dryness and not specific for Sjogren's.  Many people have Sicca from medications or other conditions not related to Sjogren's.  don't forget, this is coming from someone with a negative lip biopsy and no labs indicating Sjogren's.

Your lip biopsy confirms (according to a widely used grading scale) your condition and whether or not your dry mouth is severe does not matter.  Sjogren's is a systemic condition and not everyone has the same level of dryness, vs other symptoms...like neuro involvement, organ involvement, etc.

[MAT51]

Thanks so much for this reply Anita.

The closed FB page is controversial in that it's for users of LDN - which I'm not of course. I joined it a few years ago in my quest for well informed discussion as the other chap is a PhD scientist and is very helpful. I think I just clicked on it to say I had autoimmunity and wanted to learn more about LDN. I  rarely go on it but it includes Scleroderma and you may recall I thought I might have this- but there are also some interesting links, posts and discussions and I do occasionally join in when I feel I want to know more about the science behind Sjögren's and autoimmunity.

And I usually take these comments from this chap stating what Sjögren's is or is not with a pinch of salt. But I've had a bad week with new parasthesia (feels different to my usual SFN and extends through my elbows right down into to my fingertips. I've also had a lot of tummy pain and suspect a  UTI. It's a public holiday today and we are driving down to London and beyond to see my frail mother in law at the other end of UK and visit one of the few UK Sjögren's experts - so I'm feeling a little delicate at the prospect of lots of travel and this chap's statements about my Sjögren's being something else - RA or Lupus - got to me a bit I admit. So I came here with it.

I had long decided that this chap was merely envious of those with more clear diagnosis - but he's not wrong for saying that seronegative people like me won't be eligible to participate in trials or the new Biobank starting in Glasgow I'm guessing. https://www.gla.ac.uk/news/headline_550441_en.html

Anyway Anita do you think this surge in pins and needles in both arms and face is a flare of SFN or possible C6 changes observed following an MRI of my neck 3 years ago? I've managed to expedite my annual neurology appointment from April to this November but it is concerning me a lot - I feel as if I'm in the middle of an electric storm?!