Poll - Have you been tested for Sjogren's Syndrome?

[TigerLilea]

I'm curious to know how many other people with ME/CFS have tested positive for Sjogren's syndrome. I was recently tested and came up positive for SS-A, however, I don't have the classic symptoms (dry eyes and dry mouth). I haven't seen the Rheumatologist yet, but according to my Internist approximately 25% of people will test positive for the antibodies without actually having Sjogren's.

 

[Wonko]

I haven't been tested by my GP/NHS but I did have a full thyroid screen last year (private) which included 2 thyroid antibody tests. Both were, according to memory, mid range normal.

I do have dry eyes and frequent, but not continuous, dry mouth.

I assume this is completely unrelated to Sjogrens.

 

[Arnie Pye]

I haven't been tested but think I would be a good candidate for testing.

 

[wigglethemouse]

I haven't seen the Rheumatologist yet, but according to my Internist approximately 25% of people will test positive for the antibodies without actually having Sjogren's.

My understanding is less than 50% of Sjogrens patients will actually test positive for SS-A or SS-B. It can take 10+ years for these to appear. Early Sjogrens antibody tests are available in the US and seem to pick up more positive tests. This article about the early antibodies is interesting as it highlights that Sjogrens is so much more than dry eyes and mouth. It is an autonomic disease causing dysautonomia and neuropathy among many things.
https://www.dysautonomiainternation...sjogrens-antibodies-in-dysautonomia-patients/

Dysautonomia International President Lauren Stiles was diagnosed with POTS and Sjögren’s syndrome in her early 30s, younger than the typical Sjögren’s patient. She co-authored a research study on Sjögren’s syndrome related antibodies in dysautonomia patients that was presented at the 2016 American Academy of Neurology annual meeting. The study found that 41% of idiopathic dysautonomia patients who reported either dry eyes or dry mouth had antibodies that are found in the early stages of Sjögren’s syndrome.

This is a very interesting paper [Taken from PR https://forums.phoenixrising.me/threads/kynurenine-pathway-and-sjogrens-syndrome.75239/#post-2182697]. Ties in many symptoms & markers a subset of ME patients are starting to report, but in Sjogrens. Very interesting how it describes the progression of CNS dysfunction in a disease many think is just dry eyes and month. Even mentions antibodies to Muscarinic receptors that recent ME research is also highlighting (Cell Trend test).
Neurological and Inflammatory Manifestations in Sjögren’s Syndrome: The Role of the Kynurenine Metabolic Pathway

Abstract
For decades, neurological, psychological, and cognitive alterations, as well as other glandular manifestations (EGM), have been described and are being considered to be part of Sjögren’s syndrome (SS).

Dry eye and dry mouth are major findings in SS. The lacrimal glands (LG), ocular surface (OS), and salivary glands (SG) are linked to the central nervous system (CNS) at the brainstem and hippocampus.

Once compromised, these CNS sites may be responsible for autonomic and functional disturbances that are related to major and EGM in SS.

Recent studies have confirmed that the kynurenine metabolic pathway (KP) can be stimulated by interferon-? (IFN-?) and other cytokines, activating indoleamine 2,3-dioxygenase (IDO) in SS.

This pathway interferes with serotonergic and glutamatergic neurotransmission, mostly in the hippocampus and other structures of the CNS.

Therefore, it is plausible that KP induces neurological manifestations and contributes to the discrepancy between symptoms and signs, including manifestations of hyperalgesia and depression in SS patients with weaker signs of sicca, for example.

Observations from clinical studies in acquired immune deficiency syndrome (AIDS), graft-versus-host disease, and lupus, as well as from experimental studies, support this hypothesis. However, the obtained results for SS are controversial, as discussed in this study.
Therapeutic strategies have been reexamined and new options designed and tested to regulate the KP. In the future, the confirmation and application of this concept may help to elucidate the mosaic of SS manifestations.

 

[oldtimer]

I ticked the third box but I still don't know whether I have SS or not and have decided that in my case it's not important to know.

Recently I was referred to a rheumatologist who did all the usual tests. They were negative which, as already mentioned, doesn't mean you don't have SS.

My eyes are a big problem. Fairly bad neuropathy and other things that may or may not be attributable to SS didn't seem to be important in the initial considerations.

The rheumatologist referred me on to a specialist in lip biopsies who seemed to think my mouth wasn't really bad enough to provide a definite answer without positive blood results. She managed to squeeze some saliva from a large gland on one side of my mouth and not so much on the other, which fascinated me for some reason.

At this point I had already spent several hundred dollars and didn't want to add another $300 for the biopsy so I settled on not knowing any more and just treating my eyes.

Next stop, two days ago, was the ophthalmologist who added another two punctal plugs in the upper tear ducts. With all 4 tear ducts blocked and no outlet for tears my eyes are still dry and don't overflow but the stinging is greatly reduced and I only need lubricating drops 3 or 4 times a day instead of at least hourly. I'm happy!

 

[Ravn]

Answered "tested but negative".
More precisely I've had the autoantibody blood test but no biopsy. So you could say I've been partly tested.
My dry eyes are mild and my dry mouth is intermittent. The doctor took my word for it on the eyes and did a sort of timed spit production test for the mouth which was borderline.

 

[Samuel]

might want to specify the tests? they might change or vary.

sjogren's antibodies ss-a(ro) and ss-b(la) both negative.

i don't know what distinguishes ss clinically from being part of my highly multisystem, highly multisymptom meicc++++++++ presentation.

same question with mcas, eds, sle, etc.

 

[Hip]

Sjogren's has been linked to chronic enterovirus infection of the salivary glands. This might explain why the prevalence of Sjogren's is higher among ME/CFS patients (most ME/CFS patients have chronic enterovirus infections).

Interestingly, my mother developed Sjogren's at about the same time I developed ME/CFS, which was just after a coxsackievirus B4 virus infection spread through my friends and family.

 

[Wonko]

..... just after a coxsackievirus B4 virus infection spread through my friends and family.

How do people get a diagnosis that specific for a virus?

All I've ever got, or my family when I was living there, is "well its a virus innit, take this prescription for a painkiller that will do precisely nothing to help and come back in 2 weeks if you've still got it"

 

[Hip]

How do people get a diagnosis that specific for a virus?

It's not easy to detect a virus, unless you get a blood sample taken during the acute infection (first week or so) when there are still high levels in the blood, and you use either PCR testing or antibody testing.

After that period, it's often very difficult to figure out what virus hit you, because you will usually no longer have the virus in the blood (so blood PCR will be negative), and although you will have mildly elevated IgG antibodies for life for that virus, you will also have mildly elevated IgG antibodies to dozens of other viruses that you caught earlier in life. So you cannot know which of those viruses with mildly elevated IgG antibodies was the culprit.

 

[Utsikt]

From another thread:

They use it frequently in SLE, various neurological autoimmune illnesses, SjD (which is what huge % of 'MECFS' patients actually have anyway)

What’s the basis for the claim that a «huge %» of pwME/CFS actually have Sjögren’s?

 

[Pibee]

Basically, numerous scientific papers

 

[Utsikt]

Basically, numerous scientific papers

Could you share any of them?

 

[Pibee]

Just google : CFS, Sjogrens, GPCR, muscarinic antibodies, SFN, POTS. I mean the overlap is well recorded. With LC and Sjogrens there is interesting research in mice where 4 of 6 LC mice met Sjogrens criteria based on tear gland biopsies too.
I am not following last years much of the research but the connection is well established.
There is also this bad paper from Scheibenbogen who took 60+ yr old Sjogrens patients, compared them to 30 yr old MECFS patients and said it's different. Wow. Everyone knows Sjogrens looks differently in younger population than in eldery.

 

[Utsikt]

Just google : CFS, Sjogrens, GPCR, muscarinic antibodies, SFN, POTS. I mean the overlap is well recorded.

Many diseases have overlapping symptoms. That doesn’t really mean much.

I would be very interested in seeing papers that show that people that have received an ME/CFS diagnosis frequently have Sjögrens, either as an additional diagnosis or as the only correct diagnosis.

I don’t have the capacity to go digging for papers. You made the claim, so the burden of proof is yours. Sources are appreciated so everyone can make up their minds about what they think of the evidence.

 

[Verity]

Just google : CFS, Sjogrens, GPCR, muscarinic antibodies, SFN, POTS. I mean the overlap is well recorded. With LC and Sjogrens there is interesting research in mice where 4 of 6 LC mice met Sjogrens criteria based on tear gland biopsies too.
I am not following last years much of the research but the connection is well established.
There is also this bad paper from Scheibenbogen who took 60+ yr old Sjogrens patients, compared them to 30 yr old MECFS patients and said it's different. Wow. Everyone knows Sjogrens looks differently in younger population than in eldery.

Could you point us to some specific papers? It’s a lot to ask for people to go digging. Remember most of us here have ME.

 

[Pibee]

I just explained it so many times, and I think who wants to know will find out. There are patients with MECFS who even have positive SSA, and still think it's not Sjogren's. Sometime,s providing proofs is wasting my time. It is also concerning that in this Poll 61% (or more) weren't even screened for Sjogren's.

Many diseases have overlapping symptoms. That doesn’t really mean much.

This kind of comparison doesn't stand here. Because Sjogren's would be higher in hierarchy, with known pathology in B cells and hyperactivity, prone to multiple positive autoantibodies, and often causing various neurological complications - for example, SFN (and therefore dysautonomia/POTS) s a symptom of Sjogren's has been finally added to the criteria in 2024, among neurological complications of Sjogren's. Previously, large fiber neuropathies and cranial neuropathies as well as MS-like CNS involvement, were already there. So, Sjogren's is a systemic disease and an attack on the nervous system is one of the common complications. Meaning, one of the symptoms of Sjogrens is sometimes POTS, MECFS.

MECFS alone is not systemic like this, it is defined through that set of symptoms, so I'd not call it overlap in case if Sjogrens exists in that person. Even clinicians and researchers can disagree how to view Sjo - for example I have a friend with CIDP + Sjogrens (and POTS, SFN), and although all of her doctors agree every symptom she has is Sjogrens (99.9% neuro symptoms, she even had disease onset by suicide attempt so psychiatric involvement), for the insurance purpose first 7 years she gets IVIG on 'Sjogrens diagnosis and other 7, if needed, they plan to do it on CIDP. But if you stick to the published research she has neurosjogrens.

 

[Jonathan Edwards]

I just explained it so many times, and I think who wants to know will find out.

Come on, what are you basing this on? I have not seen a shred of evidence for ME/CFS being linked to Sjoigren's other than in that people with "Sjogren's" are said to have a lot of fatigue (which of course people with ME/CFS deny they have). Sjogren's is the most fringe of rheumatological diagnoses with private practitioners all over diagnosing it by magic. Nobody much on this forum has sicca syndrome as far as I know, or Ro antibodies.

What you have said so far seems to be vague handwaving.

 

[OrganicChilli]

Sjogren's doesn't have PEM. Who cares if some other symptoms overlap? You can be deficient in iron or B12 which can result in fatigue, but that doesn't mean you have ME/CFS or Sjogrens.

 

[Pibee]

Many diseases have overlapping symptoms. That doesn’t really mean much.

LOL, so what is causing PEM in Sjögren's patients who have PEM? Can you provide proof that Sjögren's doesn't include symptoms of PEM? The research is also pretty consistent that neurological involvement of Sjogren's can precede sicca by a decade.