Salty tast in my mouth from diagnosed with Sjogren's

@neisie13 , ice on car and yard is crazy! It took an inordinate amount of time to clear ice from my car. Beyond thick. The yard is coated too. A trek to the mailbox was scary! Ice like cement. I did make it to my ophthalmologist appointment at Duke. Few patients there. Be careful. We’re expecting more stuff this weekend!

Today my salty taste was very low. Hope the progress continues.

@celia16 Glad you made it to your ophthalmologist appointment!! I went a couple of weeks ago and he put plugs in my bottom tear ducts because my ears are so dry. It helped a bit but I still need drops during the day. Yes, heard about the potential storm this week-end. At least we were able to dig the car out but it took all day!! Last week the grocery stores ran out of everything so I don't even know if they have been able to restock yet and it will be crazy again this week!! Luckily I have no kids in school here anymore but the schools will be closed all week here because they can't even clear the sidewalks for kids who walk! Glad you are having a good week. I only had that one bad day of an horrible salty taste and the other days so far have been pretty okay....a bit of an off taste but nothing unbearable. Take care!!

@sharrondriver
How did you get an actual diagnosis? I've also had REALLY dry eyes for ever.

@connie2146 Have you been to a dentist recently? They can suggest better ways to treat dry mouth including Boitene products. My dentist told me that water doesn't work because it evaporates right after you drink it. There are rinses, sprays, gels and xylitol products that last a lot longer. My dentist was much more helpful than my primary care doctor. There are also two medications that increase saliva. Have you tried anything other than water?

@neisie13 I take Cevemeline

@sharrondriver I tried Salagen and Cevemeline but unfortunately they did not help my taste disorder. The rheumatologist thinks it is more of a neurological issue so I will see a neurologist in March. It has been a six month wait for an appointment!!

@neisie13 , I saw 2 neurologists about my taste issue (I had other issues too. My taste issue occurred along with other things like loss of smell, which returned in 5 months, hair loss, fasciculations, numbness and tingling in hands and feet, and they couldn’t really say what the cause was. The possibilities include brain damage, neuropathy, attack by virus (Covid), autoimmune, medications, vitamin deficiency, etc, I got the impression that because there is no treatment, knowing why wasn’t crucial. So, after my brain MRI was normal, that was it for taste issue. I did get lots of labs and EMG of limbs.

My question is if it’s a permanent thing like nerve damage, then how is it possible that it changes?

@celia16 I really don't expect much from the neurologist appointment but I might as well keep it since I need to feel that I've explored every option. Since I didn't have covid, or not a single symptom of even a slight cold, it is so frustrating to figure out why mine taste issues started. I do have a lot of the Sjogrens symptoms but my blood work was normal. That is not unusual though for Sjogrens. Yes, I think you are right though. If it is neurological there probably isn't a cure but maybe just a way to lessen the symptoms. The duloxetin is helping the salty taste since it is definitely less frequent but I continue to have the sour/unpleasant taste daily. Did the neurologist have ANY advice? I can hide the taste with gum, mints, rinses, etc and sometimes the oral rinses keep it under control for two or three hours. My brain MRI was normal too and so was the CAT scan of my sinuses. Now I also have problems with my hands which I think it Raynauds with this cold weather!! Never ending and today the heat in our house stopped working!!! It was 54 degrees in the house and it was about 10 degrees out but now it's up to a whopping 21. We have space heaters going in a few rooms and the repairman is supposed to come out tomorrow. Another crazy week!!!

@neisie13 , oh my goodness! I hope you can get help with heat soon. I’ve had it 58 in the house recently and it wasn’t fun.

I certainly hope you do consult with the neurologist. It was not my intention to discourage that. I hope he has much to offer! I was disappointed that I didn’t get more, but I think they did the best they could. I’m always open to new ideas and advice. We all learn from each other. Maybe, he can help. That would be awesome! Please post how things go.

@celia16 Thank you for your support!! I don't have high hopes for my visit with the neurologist but no, I didn't feel that you were discouraging me to go....We both have tried every specialist to get an answer but it seems to be a very uncommon syndrome as we are finding out. Yes, I will let you know what happens during the visit in March.... The day was quite a challenge with the heat pump broken but we have three heaters that are safe to use and they are keeping three rooms in the mid sixties so it's not too bad. Hoping though that a part doesn't have to be ordered to fix it!!! It's 12 degrees outside right now!!! Have a good week-end!!!