My rheum. at Johns Hopkins prescribed (and I know this sounds strange) Nyastatin, which is a vaginal suppository, to be dissolved on the tongue 3 times a day, and it works! Tastes kinda nasty, but not too bad....my tongue was cracked and called a "strawberry tongue"--beet red and peeling also. Soooo painful, and this is the only thing that works, Well, Nyastatin and really watching what I eat--nothing acidic. I also use Biotene mouthwash every time I brush my teeth. Good luck!
THanks so much for the information Leslie, I will check into this. I will probably be making a Rheum. appt soon...
Do you find that you have "bouts" seems like first it was the horrible fatigue and aches, then my ears or nose, eyes..seems like one thing flares up more than the others and that will be my current issue? Is it like this for you?
When I have "flares", I first notice severe joint and muscle pain all over my body--sort of feels like I'm coming down with the flu. Then, all I want to do is sleep for daysss, which I usuallly can't do. I don't have much of a problem with my eyes, but do have the extremely dry throat and mouth, which cause the tongue problems. I also have a lot of neurological pain in my feet and legs--numbness, burning...for which I see a neurologist. He says this goes along with Sjogren's, and I'm on an antidepressant and some other medications for it. Helps me sleep at night, which I wasn't doing when this all flared up at first.
Also, I just had a sudden bout of very bad bronchitis--seems like it came out of nowhere, right over Christmas. I've read that those with Sjogren's often battle bronchitis and pneumonia because of dry air passages. Sooo, if you haven't had a pneumonia vaccine yet, I'd do so!
Thanks Leslie, wishing you good luck with it too...the joint/muscle pain and sleep was what orginally presented itself..the fatigue was horrible. I am so grateful it has been probably a year since I have had one of those flare ups..the bronchitis I seem to get every year and it takes me forever to get rid of any type of cold..literally I will have it for 4-6 weeks..I am going to check into the nyastatin and hopefully that will help with my tongue..thanks for the heads up about the pneumonia vaccine as well..hope you feel better.
I met a woman who carries a small spritz bottle of olive oil. She said it helps, espec. before she eats.