1. < Autoimmune Diseases

Sjögren’s syndrome severe dry mouth with loss of taste. Also dry eyes

Posted by lorrielynn @lorrielynn, Feb 13 4:32pm

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?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Joanne Narna | @mothermary1 | 1 day ago
In reply to @poppy07 "I was diagnosed with Systemic lupus and Sjögren’s over 30 years ago. Up until now I..." + (show)
@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.

Jump to this post

Hi, are those the eye drops made from your own serum. They draw your book, spin and use that to make your eye drops. I was desperate and tried it for 4 months and nothing changed. I’m in Georgia now from Massachusetts and they never heard of it here. It’s been around a few years now. I hope it works for you. Insurance didn’t cover mine and I paid 400 dollars.

REPLY
View MoreView Less
Please sign in or register to post a reply.