What helps with dry mouth with Sjogren's?

Posted by bonnies1999 @bonnies1999, Jan 9 1:32pm

My 54 yr old son was just diagnosed with Sojourns disease
Extremely fatigued, very dry mouth, joints ache
Nothing help. Any suggestions?

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Profile picture for char8972 @char8972

Does this work for you? I've been using over the counter drops, gels and ointments.

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yes char8972 it's an oily drop so it seems to lubricate better for me

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Profile picture for lorrielynn @lorrielynn

I have tried pilocarpine on two occasions. The side effects were unbearable, cold sweats to the point of shivering, then hot sweats that left me feeling clammy
Just to get saliva I use x-pur gums, x-pur pastilles, Thera breath dry mouth lozenges. Also pur mints. I use biotene dry mouth spray and biotene mouth gel. I chew sugarless gum and lifesavers.
Now I am starting to feel nauseous, not sure if it’s because of all the above.
Life is not as much fun, when you have loss of taste, so this has effected my mental status.
Can anyone relate or have and more helpful suggestions?

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I can certainly relate to loss of taste and smell. It’s been almost 3 years for me now without it. It is a pretty dull life, not much to look forward to as far as food goes, then add that I have several food sensitivities along with no taste or smell. It’s a drag! Lost is 2 days into Covid in December of 2022. I’ve had 7 Stellate Ganglion Block injection, nothing so far…

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Profile picture for gema98 @gema98

I have not by diagnosed with this but I drink water throughout the day for my dry mouth. For my dry eyes I use Systane Hydration PF eye drops, I have hypothyroidism, PBC/cirrhosis which are autoimmune diseases.

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I have the same problems. I take Plaquenil and Systane eye drops. At first I was treated for lupus and Sjorgens.
Now the diagnosis is connective tissue disorder and Fibromyalgia.
Symptoms vary. Deal with extreme fatigue.

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Profile picture for char8972 @char8972

I was diagnosed with Sjorgens syndrome 14 yrs ago. I was also diagnosed with St4 NH Lymphoma 5 years ago. Thankfully I am blessed to be in remission for 3 yrs now. My son is a Dr. of Internal Medicine. He told me there is now a medical connection between Sjorgens and Lymphoma. Now, when diagnosed with Sjorgens he orders a cancer panel also. I am sharing this because for me to be St 4 I had Lymphoma for many years. Please talk to your Drs and have a cancer panel done if you have Sjorgens syndrome.❤️

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I've had Sjogren's for 30 years and in 2023, I was diagnosed with Extranodal Marginal Zone Lymphoma on the base of my tongue. So yes, if you have Sjogren's, you are at an increased risk for developing lymphoma. I had radiation and am thankfully now in remission. I also have Interstitial Lung Disease which is also associated with Sjogren's. I am on Plaquenil and I use refresh eye drops and the Biotene mouth rinse which really helps my dry mouth at night.

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Profile picture for lorrielynn @lorrielynn

I have tried pilocarpine on two occasions. The side effects were unbearable, cold sweats to the point of shivering, then hot sweats that left me feeling clammy
Just to get saliva I use x-pur gums, x-pur pastilles, Thera breath dry mouth lozenges. Also pur mints. I use biotene dry mouth spray and biotene mouth gel. I chew sugarless gum and lifesavers.
Now I am starting to feel nauseous, not sure if it’s because of all the above.
Life is not as much fun, when you have loss of taste, so this has effected my mental status.
Can anyone relate or have and more helpful suggestions?

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Thank you for sharing!🙂

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Profile picture for lorrielynn @lorrielynn

I have tried pilocarpine on two occasions. The side effects were unbearable, cold sweats to the point of shivering, then hot sweats that left me feeling clammy
Just to get saliva I use x-pur gums, x-pur pastilles, Thera breath dry mouth lozenges. Also pur mints. I use biotene dry mouth spray and biotene mouth gel. I chew sugarless gum and lifesavers.
Now I am starting to feel nauseous, not sure if it’s because of all the above.
Life is not as much fun, when you have loss of taste, so this has effected my mental status.
Can anyone relate or have and more helpful suggestions?

Jump to this post

Any problems with loss of taste?

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Profile picture for dorita7251951 @dorita7251951

I have the same problems. I take Plaquenil and Systane eye drops. At first I was treated for lupus and Sjorgens.
Now the diagnosis is connective tissue disorder and Fibromyalgia.
Symptoms vary. Deal with extreme fatigue.

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Thank you for your information, I really don’t know much about these diseases. I’ve been having pain on the bottom of my heel, my daughter is a PT and gave me exercises to do for that. She said plantar fasciitis but I haven’t seen a doctors about it.

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Profile picture for lorrielynn @lorrielynn

I have tried pilocarpine on two occasions. The side effects were unbearable, cold sweats to the point of shivering, then hot sweats that left me feeling clammy
Just to get saliva I use x-pur gums, x-pur pastilles, Thera breath dry mouth lozenges. Also pur mints. I use biotene dry mouth spray and biotene mouth gel. I chew sugarless gum and lifesavers.
Now I am starting to feel nauseous, not sure if it’s because of all the above.
Life is not as much fun, when you have loss of taste, so this has effected my mental status.
Can anyone relate or have and more helpful suggestions?

Jump to this post

If you don’t mind me asking….do you know what test determined Mixed connective tissue disease !

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Profile picture for lorrielynn @lorrielynn

I have tried pilocarpine on two occasions. The side effects were unbearable, cold sweats to the point of shivering, then hot sweats that left me feeling clammy
Just to get saliva I use x-pur gums, x-pur pastilles, Thera breath dry mouth lozenges. Also pur mints. I use biotene dry mouth spray and biotene mouth gel. I chew sugarless gum and lifesavers.
Now I am starting to feel nauseous, not sure if it’s because of all the above.
Life is not as much fun, when you have loss of taste, so this has effected my mental status.
Can anyone relate or have and more helpful suggestions?

Jump to this post

I was diagnosed with Systemic lupus and Sjögren’s over 30 years ago. Up until now I could use lubricating eye drops which don’t contain preservatives and a gel at bedtime. This last year he have been in so much pain with my dry eyes and nothing worked . I am using hylo forte eye drops every hour and Vitamin Pos eye ointment at bedtime as I am now waiting for the Red Cross to take my blood and make Autologous serum Eye drops that are all the good nutrients that can repair the cornea . I hope it works as I can’t enjoy my life with the constant pain and burning in my eyes. I have to flood them with single vial tears in the morning to get my eyes to open. This is a new treatment and suppose to work very well. I hope they work for me.

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Profile picture for poppy07 @poppy07

I was diagnosed with Systemic lupus and Sjögren’s over 30 years ago. Up until now I could use lubricating eye drops which don’t contain preservatives and a gel at bedtime. This last year he have been in so much pain with my dry eyes and nothing worked . I am using hylo forte eye drops every hour and Vitamin Pos eye ointment at bedtime as I am now waiting for the Red Cross to take my blood and make Autologous serum Eye drops that are all the good nutrients that can repair the cornea . I hope it works as I can’t enjoy my life with the constant pain and burning in my eyes. I have to flood them with single vial tears in the morning to get my eyes to open. This is a new treatment and suppose to work very well. I hope they work for me.

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Autologous serum Eye drops have worked great for me. They may see expensive at first, but considering how many vials you get, they end up being cheaper than the prescription drops.

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