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Sjogrens Topics => Living With Sjogren's => Topic started by: happylife on June 13, 2018, 08:36:48 AM

Poll
Question: After the first sjogren symtom,  how long did it take for dry mouth at night appear?
Option 1: 6 months votes: 2
Option 2: 1 year votes: 1
Option 3: 2 years votes: 0
Option 4: 3 years votes: 0
Option 5: 4 years votes: 1
Title: In how many months/years did dry mouth at night start?
Post by: happylife on June 13, 2018, 08:36:48 AM
Please respond
Title: Re: In how many months/years did dry mouth at night start?
Post by: bluegardenia on June 14, 2018, 06:40:25 AM
why at night? mine was in the day and for me dry mouth was the first symptom bec i did not give much importance to some dry eyes that i had for years
Title: Re: In how many months/years did dry mouth at night start?
Post by: cccourt1942 on June 14, 2018, 07:57:49 AM
What blue said.  I discounted my dry mouth during the day due to my work practicing speech therapy daily for decades. Many days I could drink as much as a liter between sessions.  (and then rush to pee before next one).  When I was drinking THAT much water, at the same time, I was buying the OTC dry mouth products (DID NOTHING) and drinking water all night, up 4 or 5 times a night.  Miserable.  BUT...the nighttime symptom I suffered about the last two years was waking up coughing. A dry, non productive cough which I couldn't quench, nor could I stop.  Many nights/mornings between 3 and 4 a.m. I couldn't go back to sleep due to this "cough".  By that time I was retired, but did perform contract work 3 to 4 days a week for 4 to 6 hours per day.   After dx and medication, I realized I was not swallowing (absence of saliva) and the "cough" was really an apnea "type" response--now that's a guess, not a diagnosis.  I believe the autonomic action of swallowing was interrupted, and I would wake up with what I thought was coughing...and really, no saliva anywhere: oral cavity, esophagus, etc.  I would wake up choking (again ==I think/believe)  The degree of this day and night discomfort was about the last 3 or 4 years before dx.  Let me remind you or anyone else, I was not SEARCHING for a dx nor did I ask a physician about it.  I'd always consumed a great deal of water in my work.
ccc
Title: Re: In how many months/years did dry mouth at night start?
Post by: markt on June 14, 2018, 09:16:34 AM
Everything happened very quickly for me...

Over the course of several weeks, I had progressively worsening dry spots on my eyes, which eventually became corneal erosions.  My right lacrimal/units produced more tears intermittently, causing a "runny" eye... this was an automic response to make up for the lack of tear production out of the left lacrimal/units. 

Eventually the dryness progressed to inflammatory tearing and profound dryness by about week three.  The faucet had been turned off.  My ocular surface tested positive for MMP-9 for no good reason; my ophthalmologist suspected an active immune response (Sjogrens) and ordered a Sjo Test panel.

Prior to week 3 of my progressing immune response, I had no noticeable dry mouth issues.... but at that point in time, it began and became a persistent symptom, both day and night.  My spit was watery at best... and Pilocarpine had me sweating all over, which was miserable just to have the little bit of spit I did.

On Rituximab, I have had good experience with regaining salivary function and quality due to the lymphocytic infiltrate in my MALT tissue and glands being significantly reduced...  I stopped taking Cevimelline at it's peak.... one less thing for my liver to process.