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

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?

@lorrielynn I've noticed if I don't drink enough, I start the sweating, it was annoying so I had the doctor switch meds, so she put me on Cevelemine i woke up soaked from i so she put me back on Pilocarpine.(when covid hit i had to go to a factory to work for a few days and they took my temp and said I had fever I waited about 15 minutes and I was back to normal so I waited until I got to work to take it)
For the dry eyes I use a prescription eye drop Called Miebo and I use Refresh Gel drops at night

My R/A has only prescribed pilocarpin, unfortunately does not work. I am a Canadian citizen, and we are unable to obtain cevimeline, for this drug has not been approved in Canada.
He has no other suggestions, i have blood work done in April, with a follow up apt.

Does your insurance pay for Miebo? I have wanted to take one of the prescription dry eye drops for inflammation but my insurance won’t cover and they are too pricey!

Plaquanil (hydroxychloraquine) did wonders for me. I also use Biotene dry mouth spray, and biotene gentle mint mouthwash. It's VERY important to have more frequent dental exams, as dry mouth promotes cavities. Also important is to get prescription toothpaste (higher fluoride content). Best wishes.

@lgreg I’m fighting with my insurance to get it approved . When I was deemed disabled and put on Medicaid I got it for free. because my. I couldn’t afford to live on SSI so I took an early out on my pension it put me over to get Medicaid so now I’m back to square one again fighting insurance. It is not cheap $850 for a 3 ml bottle if approved I will get it for free or $39 or I can pay $60 cash thru Miebo Or Bausch and Lomb has a program to get it for $79 plus a one time processing fee of $50.

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.

Hello, I also have this disease. Mine is secondary due to my Rheumatoid Arthritis. I found Pilocarpine to make me feel awful. Cold sweats and nauseas feeling. I do use Restasis Eye drops for help with the dry eyes. It is a prescription eye drop. My dry mouth is never ending. I do have a fluoride toothpaste prescribed from my dentist to help prevent cavities. I have also found chewing sugar free gum during the day helps with saliva production. Wishing you the best🌷

Thank you very much, the info is very helpful.

My insurance does not pay, I desperately needed something because I was on Prednisolone for over a yea my eyes were so dry. From a Sjogren's Facebook page I heard about ImprimisRX an online Pharmacy, my Ophthalmologist was aware of it and said it had a good reputation. For over a year I have gotten their compounded Cyclosporine by mail (which is exactly what Miebo has) for just $55 a month. My MD sent the script into them, then I order one at a time. It has greatly improved my severe dry eyes. Look them up on the internet and ask you Ophthalmologist to create his/her account with them.