Author Topic: Worse dry mouth? Help me decide?  (Read 221 times)

Carolina

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Worse dry mouth? Help me decide?
« on: May 17, 2017, 05:31:01 AM »
Dearest Sjogren Angels,

Sometimes it is hard to know if things are actually getting worse.  Please help me decide. 

My dryness, eyes, and mouth seem to be increasing. 

My mouth now has 'foamy saliva' even 'gooey' for a long time in the mornings. 

My tongue seems to have a greenish or brownish coating on it, but it's bright pink in the very center.

I have a terrible taste in my mouth all night long and well into the morning.  I even have dreams in which I'm eating and everything tastes terrible, probably because my mouth actually tastes terrible.

My eyes are dry at night, of course, but now in the morning they sting and burn a bit, and I have 'tears' running down my cheeks for a while in the mornings, too.   

Like most of us, I deal with so many things on a daily basis and this change in the state of my eyes and mouth has developed gradually.

I take 15 mg of pilocarpine, spread over three doses of 5mg each, during the day.  I don't use Restasis, tho' I did for many years.  When I stopped 7 years ago it didn't seem to make a difference.

Do these symptoms sound like anything you have experienced with your saliva (Foamy, thick and gluey), your tongue (coated, colored, bright red center) and your eyes, burning with tears down cheeks?

If so, what, if anything is there to do about this?

Is my disease progressing after 15 years?   

This began long before I began the reduction in Medrol (methylprednisolone) by the way.

I know "it's always something' but I AM TIRED OF THIS.

Hugs,  Elaine
Female-75-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Achalasia-IBS-Knee/Shoulder Degeneration-Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-IVIG-Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-Copper-Cymbalta-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Fis

quietdynamics

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Re: Worse dry mouth? Help me decide?
« Reply #1 on: May 17, 2017, 09:35:40 AM »


Rheum increased pilocarpine to 25 mg (5mg x 5/day).  I have to be honest I rarely take it 5x's a day. We tried doses of 7.5mg but I could not tolerate it. I actually vomited. Whew.
I do meals and bedtime. Bedtime for me is unpleasant, as I do not perspire underarms and the bedtime dose coats other body areas in sweat, so on with blankets, off with blankets, on with blankets... the cats DO NOT like this ..  ;)  Plus, I learned the hard way that taking the higher daily dose.. sometimes I will perspire in genitalia area.. this does not work well with light colored slack .. looks as though you spilled something... I learned upon getting out of car to go into restaurant for lunch.. groan. Slacks: peacock blue silk..  8)
Rheum also mentioned that the pilocarpine can help with eye dryness.

Dr. can see the dryness per my tongue condition... texture, crevices, etc.
In mornings sometimes there is a coating,, even morning coffee will leave color.. so I clean/brush my tongue more other people. ( I use the coffee to see if there is an area I missed, needs more attention. My theory use oddity to my advantage.) And sometimes use a diluted peroxide rinse. After some foods I need to rigorously rinse/swish mouth with water. Foods just stick like glue.

So anyway. I rinse with diluted peroxide and when I brush (really like Arm & Hammer toothpaste) I dip brush in baking soda.
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irish

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Re: Worse dry mouth? Help me decide?
« Reply #2 on: May 17, 2017, 08:46:15 PM »
Brushing the tongue is really effective in getting rid of the gunk that builds up. It probably is from the dryness, meds, foods, and a low grade yeast that most of us have all the time.
Once you start brushing your tongue you may notice a decrease in the terrible taste in your mouth.

I have noticed that my dryness is getting worse also but I have kept up with my Restasis and it still helps though I forget to use it sometimes. You may need to see your eye doc to find out what he can suggest for your eyes so that you are more comfortable. Hope you can get some help. Irish