i have now lost all saliva in my mouth and its hard to talk
is there anything that can help?
Hi Jas -
what has your doc suggested? There are people in here who take Evoxac or Salagen. I'm not one of them. I still have some saliva. From what I can gather, people tend to favour one or the other. Like eye-drops - an individual choice. Both meds stimulate saliva production. Have you tried them?
Other than that - I don't know. I know I just hold water in my mouth sometimes. If I don't need to speak - I just hold it awhile.
Take care - Scottie :)
I have tried both Evoxac and salagen and I prefer the salagen...it's just what works best for me!
Have you tried some of the over the counter dry mouth products from Biotene? They have mouth gel, toothpaste, mouthwash...there are also some sprays out there to help with dry mouth...you can usually find these in the toothpaste aisle of any department store.
If all else fails...good old fashioned water swished in your mouth or sugar free gum or lemon drops may help!
I hope you find something to make you have more "spit" soon....let us know! If we have too much dryness in our mouths it can lead to dental and digestion problems...so its very important!
JAS, I sent you another PM since you didn't get the first. Lucy
Hi, I use Salagen, but I find if I am completely dry it doesn't work as well. I think you have to have some active glands for it to stimulate. I usually suck on ice chips. I find that hard candy can irritate my mouth if it is really dry. There are artificial salivas available, but they are a bit slimy feeling. You can also buy saliva producing tablets that are like sweet tarts. I have not tried the mouthwashes but my dentist said they work pretty well. I also use a very mild baking soda and water rinse. My dentist told me that as the glands fail they put out a substance that is acidic and the baking soda can reduce it. However, baking soda is salty so if u use too much it may make the problem worse.
I don't know what you are on for meds but painkillers, sleeping pills and antidepressants can all make dryness worse so you might want to ask doc or pharmacist to review. Might also want to ask doc about steroid blast to see if you can stop inflammation.
Hope this helps. I actually think the mouth dryness is one of the worst symptoms and I'm really sorry u have it so badly.
cinmac
thanks i will try some of them
my doc still does not think its sjs
he is sending me down the road to mayo
in the mean time i have developed bad anxiety
he thinks theres a coralation between the anxiety and the dry mouth
since all my blood work show nothing
and i went from 0 problems to no saliva in a month
thanks again
Hi Jas
I am same as you - its the worse feeling ever:( I wake at night - too often - just to spray or pop another pastille in - my tongue sticks to the roof of my mouth. There is a chewing gum I just tried today (but am in UK so not sure if you can get it) its called extra fusion by Wrigley's - its about the best so far. Still no good at night eh:(
Issey
Hi Jas,
Went I first got sick I went from nothing to zero in eyes and mouth in 3 days-and I do mean my Schirmers was a 0. My standard tests r all fine, although once in a while something fluky will show up then go away.
I've heard depression and anxiety can cause dryness but I'd really like to see scientific proof of it. Most people I know got depressed and anxious after they realized what a nightmare this disease is. Plus I have had peroids of deep depression-like suicidial thoughts and got no bad reaction from eyes or mouth, and I've had times when I have been emotionally ok and my mouth and eyes r miserable.
If it was me, and he says it's anxiety and nothing else, I think I would ask for a second opinion. I would also get a copy of all tests and progress notes and read them. I have often found stuff that has been overlooked or not mentioned by the doctor when I have read the reports. Just do not expect a pat on the head if u find something your doc missed. Sometimes they don't appreciate your efforts.
Boy, I'm getting to be bossy in my old age! It's a strange feeling but u have to trust your doctor but still double check for your self.
cinmac
when they have no clue,, anxiety and depression are there last line of defense,, When I was prescribed elavil for neuropathy pain,, it must have sent up red flags at my insurer,, next thing i know I;m getting phone calls from mental health people at my insurance,, last one was interesting,, asked me a ton of quetions,, I got really ticked with them,, and she had the nerve to tell me that if they thought Iwas a threat to myself or anyone else,, they could have me put away,, its was just insane,, a healthy nice lady on the phone talkng to somene that can barely walk,, telling me that they can pt me away,,
JAS......I've been trying to tell you via Private Message that I am from the UP. I don't see many Yoopers out on the Sjogrens boards. Your doctor sounds like he/she is full of baloney on the anxiety causing your dryness. Dryness can cause you to be stressed and anxious, we all know. He's trying to get off the hook easily.
It took Lasik surgery and Sjogrens to get my eyes, and the rest of you just anxiety? LOL.
eyeamdry
exactly!! i was diagnosed with dry eyes at 7 years old, and last thing i was , was depressed and anxious, jas`s anxiety is likley brought on worse by a doctors who knows little and cares even less, ppl are right jas, get to a different doc, this one is ful of balaoney!
T x
Hi Jason I dont know if you live in the United States but I use a rinse for my 4 year old called Oasis it is for dry mouth you can buy it in the mouthwash section. And chin up. You will get a handle on this it just might take some time. Hugs and Kisses Jonnell and Jenna
Jas-
When you see your doc you might want to discuss the rapid onset of the symptoms.
I have UCTD --Undifferentiated Connective Tissue Disease that was working its way to SS. I have found that during flares the symptoms have been made worse by certain medications.
Also, there are studies that petroleum distillates (like paint thinner) can increase the risk of UCTD.
In the mean time look into Oasis Mouth wash ( for me it lasted 2 hours) and Evoxac (4 hours).
I pray that you get better,
John
Hi Jas,
I just remebered that when I was really dry it turned out I also had a yeast infection in my mouth-another joy from the gift that keeps on giving. They prescribed a nystatin swish that did help. Has your doc checked you're mouth lately?
cinmac