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Sjogrens patients, saliva issues, flares?
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.
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Sjogrens is an sutoimmune so diet not really healful here. Suggest you check out Sjogrens Advocate https://shoutout.wix.com/so/8aOuKwxIf/c?w=aekgQKcoJQnuoWBDcsGyuOhdnG919dzNPj--JqQSbkI.eyJ1IjoiaHR0cHM6Ly93d3cuc2pvZ3JlbnNhZHZvY2F0ZS5jb20vdXNlci1ndWlkZS1uZXZlci1qdXN0LXNpY2NhLWhhbmRvdXQiLCJyIjoiYWFiZWMxZGItMThkMi00ZjJkLTk0OTktNDM3NGVkYjI4YmQ2IiwibSI6Im1haWwiLCJjIjoiZGY1NTAzYzItZDBkNi00MzVmLWE0ZGItMzQ1Y2VmNDExMjZiIn0
Sorry it posted like that
I took pilocarpine for about 3 years the sweating and increased temp was an issue for me ( I was sent to a factory to work and the first day there my boss meets me there to unload tools and that’s when Covid hit just my luck first day taking the pill and hey said I had fever, we waited 15 minutes and it went away . So I had to wait till I got to work to take it. ) I recently asked the Dr to try anything else so she put me on Cevelimine and the sweating was worse. Anyone else have that problem ? Do you take yours with or without food? Sometimes it seems like the food causes it then others it don’t !
Just joined this group. I was diagnosed in January 2022 with Sjogren's/Sicca after undergoing a Sialoendoscopy to look at and flush the Parotid glands on the sides of my face which previously had been swelling up and were painful. That coupled with terribly dry mouth, eyes, nose, skin & privates, produced a diagnosis. My former Rheumatologist seemed knowledgeable about SS but then we retired & moved to an entirely new state. There are few Rheumatologists down here in coastal Texas that are acquainted with and regularly treat Sjogren's patients. I desperately need to find one that knows all about Sjogren's.
If not for taking my prescription PILOCARPINE three times daily, I would already be dead, having dehydrated from the inside out. For dryness I also use Biotene mouth wash & mouth rinse, Xylimelts, water thickener flavored with MIO at night to hydrate my throat & esophagus. I also drink about 13 cups of water per day. It's horrible but I am so grateful I don't have Rheumatoid Arthritis or other complications of this syndrome.
Good morning,
The only medication that I take is Plaquenil 200 mg a day, not sure how much it helps with dry mouth because I have been taking it every day for years and I don’t know how it would be without it. I do know that it really helps with osteoarthritis pain in my hands.
I also use eye drops for my dry eyes, helps a little but just temporary.
I have now got bleeding swollen gums , my dentist said it’s not due to gum disease and told me to speak to my Rheumatologist, my next appointment is in June.
Wishing you all the best !
Thank you much appreciate.
For the dry mouth, there are “artificial saliva “ sprays available in drugstores and on Amazon that keep the mouth moist longer than water . I use one called Spry from Amazon before I go to sleep and it helps. Worth trying and keeping at your bedside for middle of the night relief.
With Autoimmune diet it turns out is quite important. The thing about autoimmune disorders is it's all related to the amount of inflammation in the body. So even if you aren't allergic to gluten, it causes inflammation, as well as sugar, red meat etc. And a soy vegetarian replacement is really terrible for your thyroid. People need to really limit their soy intake. I wonder about vegans where everything seems to be made from soy.
I'm not doing a "do what I do" thing because man, it's not easy. I am trying - less so this week with stress and sugar needs! I'm doing better tho. More chicken, less beef, more water and sparkling water for flavor. Rice crackers for better snacks. I can't do away with dairy, esp cheese so I'm a work in progress. But I know when I was really good with my diet for two years, I had much less pain.
Autoimmune issues are very responsive to diet. And sleep. And stress of course.
wow. Pilocarpine is very very drying. There are some really good gel eyedrops at our local grocer and walmart. Also an ointment of the same name for sleep. Dry eye can cause terrible pain. I thought I had a scratched cornea when it was actually dry eye. You do better than I with water. I'm working at doing better.