I have not been diagnosed with Sjogren's although I've seen 2 different rheumatologists. I saw the first after a referral from my PCP. I have Raynaud's and was having problems with that and feeling cold all the time. When I saw her, she asked about dry eyes and mouth which I had been experiencing. The dry eyes have been a problem for years but have gotten much worse in the last 8 months (opthamologist is ready to put me on Restasis). The dry mouth was relatively new and I assumed it was from the Zyrtec I had been taking. She ran tests and my SS-B was positive at 1.6. This was last December. She referred me to rheumatologist #1 who said my mouth and eyes weren't dry enough and my SS-B wasn't high enough. She didn't think I had Sjogen's. She repeated the labs and added some. SS-B was now 1.5 and all others were normal. In April I started having tingling on my face/head and hands/forearms. I saw a doctor who thought it was tension. After a month of it continuously tingling, I went back to my PCP. She ordered an MRI which resulted in me seeing a neurologist. Based on my symptoms, he suspected small fiber neuropathy and wondered why I wasn't being treated for Sjogren's. So to help me, he did a bunch more labs, an EMG and then a skin punch and confirmed that I had small fiber neuropathy. He referred me to a university level rheumatologist. Today was my appointment. He said he agreed with the first rheumatologist although he said they could do a lip biopsy to try to get me the diagnosis of Sjogren's. But in the end, he said it wouldn't change how I was being treated for the neuropathy (Gabapentin) which is my biggest concern right now because I feel on edge constantly. I didn't want a lip biopsy and so left crying. I am afraid to do the lip biopsy because of the risk of numbness. Now I am reconsidering. But ultimately, I just don't know if my dry mouth is typical of others with Sjogren's. Maybe I'm just anxious because this has been going on so long and I feel like I'm getting no where. So my question is does those with an actual diagnosis of Sjogren's who still have some saliva production have varying amounts of saliva during the day? At night I get up and have to use tears and rinse my mouth with water several times. In the morning my mouth is quite dry. When I go to work I chew sugar free gum to help with the dry mouth but sometimes it sticks to the roof of my mouth because it is so dry. But in the evening my mouth isn't as dry and I have more saliva. I don't know if different glands produce saliva during different times of the day or if I'm just crazy and somehow causing this and need to let the possibility of Sjogen's go.
It's an interesting question. I don't see why you can't have varying degrees of saliva throughout the day. I use meds (evoxac) to increase saliva, but I know that I'm much dryer overnight, and a bit better in the afternoon. By the way, I test negative for Sjogren's antibodies. I'm completely seronegative, with two autoimmune diagnoses.
I can’t speak for everyone with dry mouth. My experience is my mouth is constantly dry. Never varies. What does vary is the amount of pain of my tongue. Some days, the tongue pain is gone but my mouth is still very dry. I have difficulty swallowing food because of the lack of saliva. I believe it is possibly to vary in the amount of production of saliva for individuals. I know that with Sjogrens, symptoms can come and go. Kind of a remission of symptoms and then return again. The severity of symptoms can change. New symptoms can pop up at any time.
I have seen changes during the day. I always thought that was the Evoxacc "working". Mom would get a little saliva sometimes. Same thing with pilocarpine when she was on that. I figured it's just like the evoxac producing sweat... it comes in a wave.
I dont have sjogrens myself but I notice that saliva glands do different things during the day. So if yours function even a little bit... that could reflect that.
Thank you for the insight. I called the doctor's office today and asked if I could go ahead and do the lip biopsy. By the end of the day I had a call back and they are referring me to an ENT doctor for it. The doctor also requested that I repeat the labs for the SS-A and SS-B antibodies while I am at Northwestern. I have heard of people getting different results with different labs and wish I could have done that yesterday just in case they show up more positive. But I'm still glad they are repeating them. I would just like to have a definite diagnosis.
I’ve noticed that my mouth isn’t as dry for a while after I’ve eaten something. Especially food with sugar in it.
I’m the opposite- my mouth’s drier in the evening, as are my eyes and nose… and a lot drier after eating or drinking anything sugary!