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.

@dragonpond

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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For mouth ulcers, my rheumatologist recommended two tabs Folate 666mcg each and one tab N-Acetyl-L-Cystine 600 mg per day. Both over the counter. This has helped me tremendously with the mouth ulcers. When I forget to take those, they come back. You might want to check with your doctor if this would interact with any of your meds but it doesn’t seem to have caused any problems.

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I have just discovered that I have Sjogren's Disease and have a dry mouth. I am still going for further tests but thank you all for any help. and any futher assistance would be greately appreciated.
Will try follow the 50 carbs a day diet.
Thanks

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I have just posted but then I saw your post. I had dry mouth and went to an ENT specialist and she discovered that there was no saliva coming from my 2 main salivary glands situated one in each cheek. There are 3 salivary glands. The 2 main ones are situated one in each cheek and the third one near the back of your throat/neck area I think it is. The salivary gland in the throat/neck area however is still functioning but it is not the main one. Hope this helps you to understand. At least that is how I understood it but talk under correction,

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@lindi

I have just posted but then I saw your post. I had dry mouth and went to an ENT specialist and she discovered that there was no saliva coming from my 2 main salivary glands situated one in each cheek. There are 3 salivary glands. The 2 main ones are situated one in each cheek and the third one near the back of your throat/neck area I think it is. The salivary gland in the throat/neck area however is still functioning but it is not the main one. Hope this helps you to understand. At least that is how I understood it but talk under correction,

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Hi @lindi and Welcome to Mayo Clinic Connect! You’ve found a great site where everyone shares what works or doesn’t in managing sjogren’s. Here is another discussion-one of many:
https://connect.mayoclinic.org/discussion/sjorgens-syndrome/
https://connect.mayoclinic.org/discussion/sjogrens/
Can I ask how you found Connect?

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@becsbuddy

Hi @lindi and Welcome to Mayo Clinic Connect! You’ve found a great site where everyone shares what works or doesn’t in managing sjogren’s. Here is another discussion-one of many:
https://connect.mayoclinic.org/discussion/sjorgens-syndrome/
https://connect.mayoclinic.org/discussion/sjogrens/
Can I ask how you found Connect?

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Dear Becky
Thank you for your hugs. Brought tears to my eyes.
At present I only have the saliva sjogrens and my kidney marker has dropped but hopefully it is nothing. Going to keep an eye on it.
Telling you this because I could have tears. Thanks.

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@becsbuddy

Hi @lindi and Welcome to Mayo Clinic Connect! You’ve found a great site where everyone shares what works or doesn’t in managing sjogren’s. Here is another discussion-one of many:
https://connect.mayoclinic.org/discussion/sjorgens-syndrome/
https://connect.mayoclinic.org/discussion/sjogrens/
Can I ask how you found Connect?

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Dear Becky
I decided to go to the Mayo Clinic site and google Sjogrens as there is always helpful information to be found there. I then came across this site and decided to join. Thanks

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Hi there, I was diagnosed in 2017 with Sjogrens. I have no saliva to speak of. I carry water wherever I go or else I chew sugarless gum. I have flares quite often so I am trying a healthy diet, low carb and no sugar. I break out in bumps on my head and they scab over quickly. This past week I got a large bump on my tongue and other ulcers in my mouth. I was wondering if the bumps and ulcers were related to the Sjogrens.

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@burlingtongirl

Hi there, I was diagnosed in 2017 with Sjogrens. I have no saliva to speak of. I carry water wherever I go or else I chew sugarless gum. I have flares quite often so I am trying a healthy diet, low carb and no sugar. I break out in bumps on my head and they scab over quickly. This past week I got a large bump on my tongue and other ulcers in my mouth. I was wondering if the bumps and ulcers were related to the Sjogrens.

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@burlingtongirl I have a scalp rash sometimes. But I haven’t had it since I was diagnosed with SS and changed my diet. If I will only eat meat, some vegetables and fruit, my SS symptoms seem to go away. I had a food sensitivity test done and avoid the foods I’m sensitive to. I also follow the autoimmune protocol diet too. When I eat the wrong foods I can tell.

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