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Sjögren’s syndrome severe dry mouth with loss of taste. Also dry eyes
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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2 ReactionsI 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.
@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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1 ReactionI 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!