Sjogrens patients, saliva issues, flares?

Posted by cblue @cblue, Dec 31, 2023

I posted earlier and got some hugs . Thanks. But I posting to see if any other Sjogrens patients had trouble with saliva.i am hoping this is a flare, and not my saliva glands shutting down. Has anyone else with Sjogrens been non- responsive or minimally responsive to cevilemine? If so, what did you do? Did your docs figure out a way to get salivation?
It’s odd that I only get saliva from the morning dose.
My sicca symptoms are all terrible when I wake up. This is a site for all autoimmune disorders, so there may not be many Sjogrens patients on this site. So thanks for the support, but I’m hoping to hear from Sjogrens patients.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Nemo1 | @nemo1 | Jan 15 10:07am

In reply to @cpd54 "@nemo1 I’m assuming you’re talking about the autoimmune protocol diet? Then yes it targets inflammation. https://www.thepaleomom.com/start-here/the-autoimmune-protocol/…...." + (show)

Thank you so so much for the information and links. I have an autoimmune condition and the doctor wants me on a radical diet to reduce inflammation. Only fish, no dairy, no nuts, no beans etc. I’m allowed fruits and vegetables. I tried it for a month except the dairy (milk for coffee, yogurt, cottage cheese that type of thing). It’s so radical I could not maintain it. She said no chicken. I never liked fish too much. Anyway that is my problem. I’m working on returning to this eliminating foods. I will look to your diet and read up on it and see what I can incorporate in my dietary life. Thank you!

Langold | @rarelybees2889 | Jan 15 10:37am

https://www.sjogrensadvocate.com/alwayssystemic

Langold | @rarelybees2889 | Jan 15 10:38am

In reply to @cpd54 "@cblue something I found very helpful at the beginning was a full on autoimmune protocol diet...." + (show)

Not much research to back it up

cpd54 | @cpd54 | Jan 15 12:33pm

In reply to @rarelybees2889 "Not much research to back it up" + (show)

I agree. But I was desperate for help and wasn’t willing to just take pain killers. My experience was it helped me tremendously. Eating AIP wont hurt you. Maybe more research will be done.

dragonpond | @dragonpond | Jan 17 4:00am

I was having saliva issues for over a year. When my Gastroenterologist put me on Digestive enzymes (ZenPep) to help my gut digest food my dry mouth went away.

My mouth symptoms were so bad that i was getting multiple mouth ulcers daily. It would be worth looking into.

karenshope | @karenshope | Jan 26 8:33pm

I have sgrogrens syndrome too. Medication is minimally helpful but expensive. Mine started with lack of saliva & flare ups can make it hard to swallow, it can feel like my airway might close. I hope they come up with something new that works.
I can say I find relief by staying well hydrated and also use daily Zylimelts. They are the best thing on the market. SS is now making my eyes dry& I use steroid drops.

cblue | @cblue | Jan 26 9:08pm

In reply to @karenshope "I have sgrogrens syndrome too. Medication is minimally helpful but expensive. Mine started with lack of..." + (show)

Seems like the medication’s to promote saliva don’t help a lot of people. It would seem important to try to come up with something more nuanced and effective.

karenshope | @karenshope | Jan 26 9:19pm

I agree, there are trials but nothing earth shaking yet. My Dr. wants me to see a specialist at UCLA which is an hour north of my home.. Haven’t done it yet.
It’s an awful thing. I retired last year in part because I was required to speak in front of a group… difficult & uncomfortable.. The xylimelts got me through the last year of my job!