Swollen Salivary gland?

[crypt0cu1t]

Does anyone else have a swollen salivary gland along with dry eyes and mouth? Could this be due to my Autoantibodies? (AChR, Salivary Protein 1)?

 

[StarChild56]

I do not have the swollen salivary glands, but do have dry/gritty eyes and dry mouth (mostly roof, middle of tongue and throat).

Swollen salivary glands can be a sx of SS:

• The parotid glands (major salivary glands located behind the jaw) may be enlarged and painful swelling may also be noted. Enlargement of parotid or other major salivary glands occurs in two-thirds of those with primary SS, but is uncommon in those with secondary SS.

https://resources.lupus.org/entry/what-you-need-to-know-about-sjögrens-syndrome

 

[Judee]

Most of the time, I have the swollen salivary glands and dry eyes plus sometimes dry mouth. Also usually when my salivary glands are more swollen, I get the crimson crescents that some ME/CFS doctors have said are typical for people with ME/CFS.

I've had the Sjogren's antibody tests done but they came back negative but some websites on the subject say you can have a negative blood test but still biopsy for the antibodies. ??

One frustration about this is, I can never get a doctor to exam my salivary glands or look at the crimson crescents. They only want to check the lymph nodes in my neck. This is concerning to me because this article says: Sjogren's syndrome (SS) was found to be associated with a 1000 fold increase in the risk of parotid gland marginal zone lymphoma and a 6.5 fold increase in the risk of NHL overall1.

and this article says: A strongly significant elevated risk was found for non-Hodgkin lymphoma associated with chronic fatigue syndrome, and in particular, associations for 2 specified non-Hodgkin lymphoma subtypes (diffuse large B cell lymphoma and marginal zone lymphoma).

 

[StarChild56]

I've had the Sjogren's antibody tests done but they came back negative but some websites on the subject say you can have a negative blood test but still biopsy for the antibodies. ??

Have you taken the Early Sjogren's Screen, I did through Quest Labs (Lab Corp) and tested positive for 2 of the 3 identified as the early markera and then re tested and came up positive for the 3rd.

These seem to be present years before the regular Sjogren's antibodies show up. Which is VERY important treatment wise as you can prevent otherwise permanent damage.

 

[hmnr asg]

Hi there,
I had a saliva gland infection and my mouth was dry for months and my face swelled up but it ended up going away after a few months.
Also i have had dry eyes forever and i remember needing eye drops long before CFS started when i was a teenager even. Now i have a box of eye drops beside my bed.
I've had the Sjogren's tests done but they came back negative also!

 

[Judee]

Have you taken the Early Sjogren's Screen

@Forçe e Honra, thanks for asking. These are the ones I've had:

-ANA screen, IFA
-DNA (DS) antibody
-Sjogren’s antibody (SS-A)
-Sjogren’s antibody (SS-B)
-SM Antibody
-SN/RMP Antibody
-SCL-70 Antibody

Is there another kind that I missed?

Also can the values change over time, do you know? Where I would be negative one time on the test but possibly positive if tested again?

 

[StarChild56]

@Forçe e Honra, thanks for asking. These are the ones I've had:

-ANA screen, IFA
-DNA (DS) antibody
-Sjogren’s antibody (SS-A)
-Sjogren’s antibody (SS-B)
-SM Antibody
-SN/RMP Antibody
-SCL-70 Antibody

Is there another kind that I missed?

Also can the values change over time, do you know? Where I would be negative one time on the test but possibly positive if tested again?

Yes, values can change over time and in fact with SS, many people are negative for all those for many years before getting a positive.

The Early SS Screen tests for different antibodies which are tools for catching SS early, vs. the average of 3 years from onset of symptoms (though I've also read other stats that list 5 years):

Q. Is it easy to diagnose Sjögren’s?A. Sjögren’s often is undiagnosed or misdiagnosed. The symptoms of Sjögren’s may mimic those of menopause, drug side effects, allergies, or medical conditions such as lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis. Because all symptoms are not always present at the same time and because Sjögren’s can involve several body systems, physicians, eye care providers and dentists sometimes treat each symptom individually and do not recognize that a systemic disease is present. The average time from onset of symptoms to diagnosis is 3 years.
https://www.sjogrens.org/home/about-sjogrens/sjoegrens-faqs

From Quest Diagnostics:
https://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=93748&labCode=AMD

The current Ro and La antibodies can delay the diagnosis by over 6 years. Recently novel antibodies identified to salivary gland protein 1 (SP-1), carbonic anhydrase 6 (CA6) and parotid secretory protein (PSP) using western blot methodology. Further studies have shown that the isotype differentiation of the markers adds to the sensitivity of diagnosis of SS. These autoantibodies occurred earlier in the course of the disease than antibodies to Ro or La. In addition antibodies to SP-1, CA-6 and PSP were found in patients meeting the criteria for SS who lacked antibodies to Ro or La. Furthermore, in patients with idiopathic xerostomia and xerophthalmia for less than 2 years, 76% had antibodies to SP-1 and/or CA6 while only 31% had antibodies to Ro or La.
Antibodies to different isotypes (IgG, IgM & IgA of SP-1, CA6 and PSP are useful markers for identifying patients with SS at early stages of the disease or those that lack antibodies to either Ro or La.

I tested positive for 2 of the antibodies first time testing, then positive for another the second time tested (couple months apart). So positive for all 3.

Additionally, I went to the Opthalmologist and got a Schirmer's Test (tear test), which was positive for Dry Eyes. Another symptom of SS. Coincidentally, I also found out I have Blepharitis (in my case inflammation of the eyelids vs. at the lash line), which is found in approximately 70% of those with SS. Using the simple methods the Opthalmologist prescribed has helped tremendously to reduce my eye discomfort*. (

*Washing lash lines and eyebrows 2x daily with Dr. Bronners - they recommend baby shampoo - warm compresses, I bought a microwavable one which I am supposed to do daily but don't always - and my own therapy to apply virgin coconut oil on my damp face, then eyes, that has 3 drops of tea tree oil mixed in at least once a day, often I do 2x a day.

My specialist put me on Plaquenil which will help with so many of the sx of SS (hopefully, only on it 6 weeks and feel a bit stronger, but can take up to 6 months to reach full efficacy) - and these are the sx I have that he stated are associated with SS:

"It is an autoimmune disease very associated with/causing dysautonomia, fatigue, pain."

Which in my case, is quite accurate.

Hope this helps.

 

[StarChild56]

@hmnr asg - highly recommend the Early SS Screen by Quest/Lab Corp

 

[Judee]

When you got your test results did it break down by IGG, IGA, and IGM?

I'm wondering because I have genetic IGM deficiency. I wonder if that would affect the test results for me.

 

[StarChild56]

When you got your test results did it break down by IGG, IGA, and IGM?

I'm wondering because I have genetic IGM deficiency. I wonder if that would affect the test results for me.

Yes, it did.

 

[crypt0cu1t]

I do not have the swollen salivary glands, but do have dry/gritty eyes and dry mouth (mostly roof, middle of tongue and throat).

Swollen salivary glands can be a sx of SS:

• The parotid glands (major salivary glands located behind the jaw) may be enlarged and painful swelling may also be noted. Enlargement of parotid or other major salivary glands occurs in two-thirds of those with primary SS, but is uncommon in those with secondary SS.

https://resources.lupus.org/entry/what-you-need-to-know-about-sjögrens-syndrome

Its looking more and more like sjogrens to me

 

[StarChild56]

Its looking more and more like sjogrens to me

Can you remind me, didn't you also take the Early SS Screen and come up positive for several? Or am I making that up (I do that sometimes)...

 

[crypt0cu1t]

Can you remind me, didn't you also take the Early SS Screen and come up positive for several? Or am I making that up (I do that sometimes)...

I am positive for the Salivary Protein 1 antibodies on the early Sjogrens

 

[Elvie]

Does anyone else have a swollen salivary gland along with dry eyes and mouth? Could this be due to my Autoantibodies? (AChR, Salivary Protein 1)?

Hi ,

I got diagnosed with dry eyes about 20 yrs ago at the eye hospital.

The dry mouth started around nine years ago. I've had really sore cracks in the corners of my mouth non stop during that time.

Two years ago i developed a swollen submandibular gland. I got sent to ENT and soon discharged from there when they couldn't find a stone blocking the pipe work during a US scan. So i've just been left with it . It's like having a golf ball sat in my throat.

At the same time this swelling emerged my eyes got really bad. It's like looking through fog and drops/gel just don't work. The optometrist has diagnosed Blepharitis/MGD

I did a private ENA test via Medichecks to see what was going on with the anti Ro and La and it all came back negative but i have wondered how reliable those tests are for a diagnosis of Sjogrens

 

[StarChild56]

The optometrist has diagnosed Blepharitis/MGD

I was diagnosed with that, too. (and SS via Early SS Screen, plus positive Schirmer's Test for dry eyes as well as other clinical)

Have you had an Early SS Screen test?

 

[Elvie]

I was diagnosed with that, too. (and SS via Early SS Screen, plus positive Schirmer's Test for dry eyes as well as other clinical)

Have you had an Early SS Screen test?

No i haven't. I'd never heard of it to be honest until i read what had been written on here today .

There only seems to be three Quest labs in UK and none of them are any where near to where i live.

 

[Rufous McKinney]

This is concerning to me because this article says: Sjogren's syndrome (SS) was found to be associated with a 1000 fold increase in the risk of parotid gland marginal zone lymphoma and a 6.5 fold increase in the risk of NHL overall1.

reporting here, I now have low grade B cell follicular lymphoma in the lymph node on my left parotid. I can feel it, it's hard, almost like bone. I noticed something hard there....probably for 4-6 months before I asked my doctor what he thought it might be (said my salivary gland); I felt run down, and my doc gave me antibiotics and suggested I get it checked out at the ENT.

It is not what a swollen lymph node normally feels like in my opinion.

I think I am closer to getting a Sjogrens diagnosis, as I am getting some more testing.

 

[Rufous McKinney]

One frustration about this is, I can never get a doctor to exam my salivary glands or look at the crimson crescents. They only want to check the lymph nodes in my neck. This is concerning to me because this article says: Sjogren's syndrome (SS) was found to be associated with a 1000 fold increase in the risk of parotid gland marginal zone lymphoma and a 6.5 fold increase in the risk of NHL overall1.

to over share, I happened to notice a small, "hard" "thing"...by my left jaw. It felt like bone, that was how hard it was. It did not feel, at all, like a standard swollen lymph node. Because my daughter was around, well I bit the bullet and agreed to a biopsy / my GP said - thats your salivary gland. Turned out it was a lymph node ON the salivary gland.

It gets achy when I"m more run down. But it hasn't gotten larger or swollen esp.

 

[Judee]

I happened to notice a small, "hard" "thing"...by my left jaw. It felt like bone, that was how hard it was. It did not feel, at all, like a standard swollen lymph node.

Is that how they originally found your lymphoma?

 

[Rufous McKinney]

Is that how they originally found your lymphoma?

Yes.

I figure if my daughter had not been around, I likely would not have pursued finding out about this. then, I'd be all stressed out about mysterious lumpy lymph.

My MO is to avoid the doctors and those invasive procedures.

Last year, I had a very small skin cancer removed. My daughter happened to be around when that happened.

That blew my theory that I won't be getting that.

Because I am already occupied with This. I consider it unfair, to then have something ELSE happen....