1. < Autoimmune Diseases

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)
@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/….
I’ve since started eating more like a carnivore diet, finding that a lot o vegetables gave me gas. Fruits don’t bother me. Here’s a link to a Dr that’s eats this way also…
https://www.paulsaladinomd.co/
Everyone has to find the way that works for them. I do know that highly processed foods make my symptoms reappear.

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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!

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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)
@cpd54

@cblue something I found very helpful at the beginning was a full on autoimmune protocol diet. It was very hard to do at first because it’s so restrictive. I’ve eased up a bit now but sugar, highly processed food and grain are absolutely no good for me. I’m researching the carnivore diet but right now I’m
Just restricting myself to less than 50 carbs a day. Stiffness is way down.

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Not much research to back it up

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1 reply
cpd54 | @cpd54 | Jan 15 12:33pm
In reply to @rarelybees2889 "Not much research to back it up" + (show)
@rarelybees2889

Not much research to back it up

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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.

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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.

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1 reply
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.

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1 reply
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)
@karenshope

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.

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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.

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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!

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cblue | @cblue | Jan 27 4:00pm

Nights are awful with just Xylimelts. ....but better than nothing. it does feel hard to swallow.

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karenshope | @karenshope | Jan 28 11:42am
In reply to @buddabu "Yes, I have saliva issues. I use Pilocarphine tablets 3 x day." + (show)
@buddabu

Yes, I have saliva issues. I use Pilocarphine tablets 3 x day.

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Does taking pilocarphine (salagen) help you ?

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