Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
About five years ago I've lost my taste suddenly, was awful, but got used to it somehow, couldn't eat anything sweet, and lost about ten kilos. Then suddenly after about a year my taste come back! So hopefully your taste will come back too! My Dr think I might have Sjogrens syndrome. For my dry mouth I'll just drink water, and occasionally have spray.
Can you please let me know what symptoms does plaquanil helps with. My Dr did prescribed it to me, but I'm scared of side effects. I wonder if it can help with my really bad neuropathy.
I am a Canadian citizen, so or coverage is different. I use restasis, with good results and my insurance does cover these eye drops
-
Like -
Helpful -
Hug
1 Reactiongracenad, I am just starting out with secondary Sjogren's (I have had relatively mild lupus for 24 years), so I don't know how relevant what I use is. I use AloeCure's pure aloe juice for mouth dryness. I hold it in my mouth for awhile and then swallow. It seems to help with saliva production (I read about it on a medical post; that is how I got the idea to try it). It helps with the dry cough quite a bit too. I also drink something warm (even water) most of the day.
-
Like -
Helpful -
Hug
2 ReactionsI'm not sure. These questions should be discussed with your doctor. I do know two things: plaquanil greatly helped my dryness, and it rarely has severe side effects ( I've had NONE). Be careful about what you read on the internet: people love to post their horror stories, none of which are the results of controlled studies, and thus statistically not worth a pile of do-do. I can't promise you'll get the same results I have, but at least talk to your doctor about your concerns and get a reliable opinion to benefits vs risks of ANY Medication.
-
Like -
Helpful -
Hug
2 ReactionsI have dry mouth that's more problematic at night. I'm usually up three or four times a night drinking water and using any one of these products -- Oasis Spray, Act Dry Mouth Gum, Act Lemon Lozenges, Epic Xylitol Mints and regular sugarless gum. My nighttime dry mouth will be worse if I eat foods that have tomato or barbeque sauce. I was able to use a Biotene Gentle Mouthwash for awhile but then it seemed too harsh. I tried the Gum Hydral Gel but that made me nauseous. Have you tried the OraCoat Xylimets? It's a stick-on disk that you use at night. Lately, I've had relief at night drinking Gatorade Zero or Bai. It seems as if any regimen I may discover, will only work for a short time. During the day, I use water, regular gum and the lozenges.
Hope this helps a little. I'm always searching for something that works well!!
-
Like -
Helpful -
Hug
1 ReactionI had a chemical reaction to the xylito melts.
No fun!
No I have not tried plaquanil, I will ask my doctor.
Thanks
-
Like -
Helpful -
Hug
1 ReactionGlad to help.
Plaquenil usually does not help dryness. For me, it helped with fatigue. Did not help with joint pain. My rheumatologist said my experience was what was seen in clinical studies.