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 suetex @suetex

I'm only on IvIg with retuximab twice ayear. Medicare pays for most of it (it is expensive) and improvements are slow but they do come.

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@suetex if you don't mind me asking are you on IvIg for sjogren's only or do you have another autoimmune disorder as well?

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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 was diagnosed with sjogren's and fibromyalgia about 3 years ago but experienced symptoms much longer before receiving my diagnosis. I lost taste/smell about 6 months ago. It is very depressing and I have lost about 20 pounds. I was on hydroxychloroquine but experienced immunodeficiency and became very ill so I have discontinued it. I'm currently searching for a new rheumatologist as I did not like my previous one. He had no bedside manner and I don't believe he listened to all of my symptoms. I'm 36 years old and it's extremely difficult for me to get out of bed and function through the day. Im extremely fatigued. I experience night sweats to the point where you would think I just jumped into the pool. I have severe joint pain. I also experience symptoms of dysautonomia. I am becoming increasingly depressed and just feel defeated.

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Profile picture for meaganfeliciano31 @meaganfeliciano31

@suetex if you don't mind me asking are you on IvIg for sjogren's only or do you have another autoimmune disorder as well?

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I first discovered it it was for a balance problem that eventually was caused ultimately by Sjogren's. As far as I know, IvIg is the only thing that works for Sjogren's. It does take its time, however. I also had abnormal Gamma Globin, too, so would likely have needed it for that.

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Profile picture for meaganfeliciano31 @meaganfeliciano31

I was diagnosed with sjogren's and fibromyalgia about 3 years ago but experienced symptoms much longer before receiving my diagnosis. I lost taste/smell about 6 months ago. It is very depressing and I have lost about 20 pounds. I was on hydroxychloroquine but experienced immunodeficiency and became very ill so I have discontinued it. I'm currently searching for a new rheumatologist as I did not like my previous one. He had no bedside manner and I don't believe he listened to all of my symptoms. I'm 36 years old and it's extremely difficult for me to get out of bed and function through the day. Im extremely fatigued. I experience night sweats to the point where you would think I just jumped into the pool. I have severe joint pain. I also experience symptoms of dysautonomia. I am becoming increasingly depressed and just feel defeated.

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@meaganfeliciano31 Hi, I have several resources you can try for looking for a doctor. Check out comprehensive medical centers (in your state) and university/teaching hospitals.
There are also
NORD. https://rarediseases.org/living-with-a-rare-disease/
GARD https://rarediseases.info.nih.gov/
Autoimmune Association. https://autoimmune.org/resource-center/finding-a-physician/
These 3 organizations keep lists of doctors so give them a call!
Becky

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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 relate to the loss of taste, it takes the joy out of life. It has been 6 years since I have had no taste. I am hoping yours will return since it’s been a short period of time. Wonder if your nights sweats are early menopause or Sjögren related. Hopefully you can get a R/A doctor soon. Have you tried pilocarpine or cevimeline? Good luck and don’t give up!

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Profile picture for John, Volunteer Mentor @johnbishop

Hello @lorrielynn, Welcome to Connect. I'm sure there are other members that can relate to your symptoms. You might want to scan through the following discussion started by @eileenb1022, while you wait for members with experience to respond.
-- Sjögren’s Syndrome: how do you manage the symptoms?
https://connect.mayoclinic.org/discussion/sjorgens-syndrome/
Has your doctor or care team offered any suggestions?

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Disclaimer: I'm not an eye doctor but...

For your information: Ask your doctor about an amniotic membrane called AcellFX.

Theres a Preservative Free Eye drop called iVIZIA, it works wonders and its inexpensive.

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Profile picture for meaganfeliciano31 @meaganfeliciano31

I was diagnosed with sjogren's and fibromyalgia about 3 years ago but experienced symptoms much longer before receiving my diagnosis. I lost taste/smell about 6 months ago. It is very depressing and I have lost about 20 pounds. I was on hydroxychloroquine but experienced immunodeficiency and became very ill so I have discontinued it. I'm currently searching for a new rheumatologist as I did not like my previous one. He had no bedside manner and I don't believe he listened to all of my symptoms. I'm 36 years old and it's extremely difficult for me to get out of bed and function through the day. Im extremely fatigued. I experience night sweats to the point where you would think I just jumped into the pool. I have severe joint pain. I also experience symptoms of dysautonomia. I am becoming increasingly depressed and just feel defeated.

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meaganfeliciano31 -- Definitely get a new doctor. Check out Castle and Connolly - they only list nominated MDs and then their check them out. Note C&C makes their money elsewhere.

Don't give up. Eat a wide variety of healthy foods. A holistic MD had fibromyalgia and cured herself in a way different from standard medical practice. She has remote patients. Dr. Margaret Gennaro, Fairfax, VA. Check her out. She could help you.

BTW, I have lupus and just got secondary sjogren's, mild so far. However, I have battled fatigue for awhile and it was getting worse and I have a difficult gut and eat only a narrow band of odd, bland, foods.

I decided to try Biotic Research's Methylfolate Plus after much research. I have less fatigue and take 100 mcg daily.

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I use Biotene toothpaste and mouthwash. It helps. I also sometimes need a sugar free lozenge. Biotene has that too. I drink lots of water. Avoiding sugar helps as well. I hear some meds look promising for Sjogrens and they are close to approving them. Time will tell!

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Profile picture for bswpb @bswpb

I use Biotene toothpaste and mouthwash. It helps. I also sometimes need a sugar free lozenge. Biotene has that too. I drink lots of water. Avoiding sugar helps as well. I hear some meds look promising for Sjogrens and they are close to approving them. Time will tell!

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@bswpb thank you for this info. He has tried all of that and nothing has helped so far

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Profile picture for bonnies1999 @bonnies1999

@bswpb thank you for this info. He has tried all of that and nothing has helped so far

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@bonnies1999 I’m sorry. Hopefully they will have the new meds soon…well meds that are used for other things that are promising for Sjogrens!

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