False Positive Sjögren Biopsy?

[shakenbake]

1. A foci score of >1 is considered positive.
2. Both eye docs think I have it bc of the biopsy.
3. I take evoxac and might just not have many dry mouth symptoms yet.
4. MRIs can't' measure lymphocytic infiltration.
5. Many many patients still test negative. Cremers says she has 3 sjogrens patients with negative Sjo tests and positive biopsys.

[MGD1701]

Just read this. Just curious how to detect if one has joint inflammation, by blood tests or?? Anyone knows?

Severe Dry Eye Linked to Joint Inflammation in Primary Sjögren’s,Study Says
May 24, 2018 by Patricia Inacio, PhD

Patients with primary Sjögren’s syndrome and joint inflammation are significantly more likely to have severe or very severe dry eye, according to a multi-center study in Spain. The finding suggests a potential new strategy to identify signs of the disease that may lead to early treatment. The study, “Factors associated with severe dry eye in primary Sjögren’s syndrome diagnosed patients,” was published in the journal Rheumatology International.

Dryness of the eyes is one of the most common symptoms of Sjögren’s syndrome patients. It happens as a result of white blood cell infiltration in exocrine glands, which are those that secrete substances like saliva, sweat, or tears.
Identifying the causes of severe or severe dry eye could “contribute to earlier diagnosis and treatment of the disease, and ultimately better long-term outcome,” researchers wrote. That’s why they set to investigate which factors are associated with the development of dry eye syndrome.

The study included 437 patients participating in the SJOGRENSER study – a Systemic Autoimmune Disease Group Project of the Spanish Society of Rheumatology. Among them, 95 percent were women, with a median age of 58 years, and a mean follow-up time of 8.3 years.

The majority of patients (94 percent) complained of daily, persistent, troublesome dry eye. Ninety two percent of them reported a sensation of sand and 16 percent developed a corneal ulcer, a painful open sore on the clear front surface of the eye.
In addition, 92 percent of patients failed the Schirmer’s test, which measures whether the eye produces enough tears to keep it moist, and 86 percent had severe or very severe dry eye.

Inflammatory articular (joint) involvement was significantly more frequent in patients with severe or very severe dry eye compared with patients without these conditions — 82.5 versus 69.5 percent. After accounting for sex, age, time of disease evolution, and disease severity, joint inflammation was significantly associated with severe or very severe dry eye. Specifically, patients with joint involvement were two times more likely to have the condition.

The findings suggest a potential strategy for ophthalmologists when diagnosing primary Sjögren’s syndrome. Before asking for more complex tests — blood tests or salivary gland biopsy, for example – physicians may look for other signs of Sjögren’s syndrome, such as joint inflammation or dry mouth. These are much easier to assess because they require non-aggressive, faster and less expensive examinations.
“
These results suggest that a directed anamnesis [collection patient history] including systemic comorbidities, such as the presence of inflammatory joint involvement or dry mouth in patients with dry eye, would be useful to suspect a pSS [primary Sjögren’s syndrome],” the investigators concluded.

https://sjogrenssyndromenews.com/201...rens-patients/

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If someone wants to explore more, here is another lengthy one
J Inflamm (Lond). Published online 2017 Nov 21.

Systematic review of randomized controlled trials in the treatment of dry eye disease in Sjogren syndrome

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5698951/

[farmgirl]

I believe that they are talking about the blood tests that are routinely investigated when Sjogrens is suspected. Primary Sjogrens which seems mostly to affect the eyes and mouth routinely does not show up on these blood tests, so much so that is it not a reliable predictor. Secondary Sjogrens is called secondary because it is often found in patients who also have a preexisting autoimmune condition such as lupus or rheumatoid arthritis. The joint inflammation markers are much more likely to be present although not always when secondary Sjogrens is the culprit rather than when it is primary Sjogrens. In this article they are saying it is linked to joint inflammation in Primary Sjogrens but I have no joint inflammation.

[MGD1701]

found this interesting article with pictures
for example:
It is important to examine skin and cutaneous involvement.
A patient may have a sore, cracked tongue that can be suggestive of Sjögren’s.

Sjögren’s, Dry Eye and You
Ocular symptoms can precede systemic ones by a decade. Here’s how you can spot it early and manage its symptoms.
By Suzanne Sherman, OD, and Fiza Shuja, OD
Published May 15, 2018

https://www.reviewofoptometry.com/ar...ry-eye-and-you

[Sisyphus]

shakenbak, sounds like you WANT to have SJo. I can't believe some of the hyperbolic things you've proclaimed in your posts. Leave your boyfriend? Quit your job? Totally disabled in a few years? Seriously? All this based on a very, very mildly positive biopsy, and despite a multitude of negative tests. One of my friends has Sjo. I've known her for more about 30 years. She has worked continuously during that time, gotten married, adopted one child and had another. She leads a Sjo support group. Never once have I heard her complain or do the "poor me" thing. Perhaps your next visit should be to a therapist.

[Rebecca Petris]

Sisyphus: You absolutely cannot treat people like this if you want to continue posting here! Rude, mean and totally unhelpful. People come here for support, not judgment!

[hopeful_hiker]

shakenbak, sounds like you WANT to have SJo. I can't believe some of the hyperbolic things you've proclaimed in your posts. Leave your boyfriend? Quit your job? Totally disabled in a few years?

I think what she wants is to know what is going on with her. Uncertainty can be nerve wracking.

Oh, and several members here had to quit their jobs or take very a extended leave of absence, including me, due to the dry eye disease.

From what I gather, Sjogren’s is a tricky disease and can range from a moderate dry eye to a whole body disease that would require multiple adjustments and different treatments besides the dry eye medications. Perhaps, your friend has a milder version of Sjogren’s or does not like to complain about her symptoms.

A handful of people really know about my eyes because I do not want my health problems to define me.

[farmgirl]

I think Shakenbake is genuinely concerned and rightly so, sometimes it is very upsetting not knowing exactly what is going on. In time it will become more clear if Sjogren's is actually the whole issue and I am hopeful that she will eventually get to a place where she can be comfortable and continue to work. I know that many have done it here but the thought of having to leave a career is very upsetting. I had to quit mine (I was a dental hygienist but not because of my eyes) many years ago and it was not easy. Sadly even if it is Sjogrens there are usually more factors at play as I am discovering but treatment options are improving every year that passes.

Yes I have Sjogrens, no it does not define me and I always try to think positive but that is just me. Having said that I would absolutely not be able to work all day on a computer. It is the fear of the unknown that scares Shakenbake because she has a good career but it is strictly computer related.