Salivary gland damage?

[Deseree]

Does Sjogren's typically completely destroy the salivary glands as time goes on? Or are the majority of people left with some function? My docs don't know what I have yet, but my biggest fear is that if it is Sjogren's, and since I'm so young, I don't have many good years left before my glands are gone. I know I shouldn't dwell on the future, but I'm scared. Thanks everyone for listening.

[Joe S.]

I do not know about anyone else but it did seem to for me. To explain a little better, I had days where i did have saliva and where I did not for a long time. (Sip, Swish, swallow your water.) Then one day they were really sore andI pulled a very hard pellet out of each one, Now I am dry most of the time and sip about 96 oz of water per day plus other fluids.

I find that having a soda or an Arnie Palmer (unsweetened ice tea and lemon aid) helps me during meals. Some days sipping water will be enough and some days it will not be enough. Sweet will some times stimulate saliva.

[irish]

I have been dry for over 40 years anad started out sucking on lifesavers and cough drops. I eventually went to the sugar free kind. Still live with the sugar free cough drops even at night. I sip a lot and suck on ice. I do get prednisone for 14 years but it is for my myasthenia gravis and I also have been on intravenous gamma globulin for 12 years also. I can't say that anything has helped my Sjogrens that I am on other than the Plaquenil.

My dryness is a constant but it wanes and ebbs. Sometimes it is bad and other times tolerable as long as I can suck on something. We are all different and it is hard to know how we will come out with the dryness. I did have my right submandibular salivary gland surgically removed in 2009 due it not secreting much and being full of sludgy stones and frequent infection. I will get spasms in my fce off and o and know that it is those little stones trying to move through the swollen salivary ducts. I use heat and gentle massage to the glands. Good luck Irish

[markt]

I elected for immunomodulatory therapy (Rituximab).  It has been studied in Sjogrens and has been shown to reduce lymphocytic infiltrate and germinal center formation in the glands.  For some people it is very effective and preserves function.  It has not helped me with my ocular dryness however.  Search my thread Rituximab Users.

When I was being evaluated at hopkins, they did an ultrasound of my parotid/submandibular glands looking for swelling, lymphocytic lesions, etc.  They didn't find anything remarkable in my case with US.  My biopsy revealed some infiltrate and focal lymphacytic sialadentitis however.  That's what they needed to deal my diagnosis and intervene.

It's only been a year since, but my oral dryness is not terrible/at times normal and waxes/wanes with the useful life of each infusion.

Xeljanz and other JAK/STAT inhibitors are shown to inhibit glandular infiltrate as well... these are FDA approved for RA (so they can be had off label similar to Rituximab).

My point; immune mediating medication is your only shot at not being impaired going forward.  More/better choices are coming to market.