Hi all, I am rinrin, very new to this site and new to SS. i have not diagnosed yet, but I have all symptoms; dry mouth, nose, throat and eye. having hard time to staying bed at night... these dryness keeps me awake or wake me u.
Simply... how do you guys cope with dry mouth.. I also feel like it just getting worse in very fast pace... I didnt have dry throat just a month ago... but now i do... i am having really hard to deal with and cope with at this point.
i also have question for medication for saliva production. how these medications works for you?
how much dose do you take and how long does it last for you/ do you have any side effect /?
I am just really trying to figure thing out and putting puzzle for me together.
does symptoms get better with time?
Hi Rinrin, you should see your doctor, blood tests usually reveal Sjögren’s. However I use Biotene otc mouth spray. It really seems to help, especially at night when I am awakened with dry mouth and coughing due to dry throat. I also use salt water rinse when and if my mouth begins to get sore. I have tried pilocarpine prescription drug but I had severe reactions to it and my insurance does not cover a significant part of the cost. The medication was to be taken twice a day…I took it once a day for 2 days and the out of pocket expense was to be $78/mo. Im continuing to read up on various products, but I must again urge you to get a diagnosis from your physician. Keep hydrated, I find I feel better and have less fatigue when I do. Upon arising I drink 8 oz before leaving my room…it’s by my bedside. Good luck!
hello, thank you very much for your reply. Yes I heard pilocarpine has side effects and not for everyone.
Yes, I did very basic blood test, been negative for SS but + for ANA, 1:40, will do more testing, but i really dont know what is going on with me.
I finally found this site and there are may people here exchanging ideas and thoughts!!!! '
i also use Vitamin E oil, just into your mouth, soothing for while...
how do you cope your dry mouth during your day?
With the spray, however I’ve heard that cocoanut oil works for some. You’ll get more replies, perhaps more ideas. I do find that the symptoms for me are severe on a periodic basis. Sometimes I have minimal problems, sometimes my tongue is quite sore and talking is difficult. Same with fatigue, sometimes quite difficult, then again the fatigue is just uncomfortable. I probably am one of those with minor problems compared to others. But then, I am “the eternal optimist”. I will overcome…
wow, you are very strong!!! i would love to be strong but a lot of times i am very anxious and panicky. I just have no idea how dry mouth get.... feeling of not be able to even breathe...
i know no one die from dry mouth, but its really bothersome... some point, I have to accept the reality and learn how to cope with... its been just really hard at this point
Anxiety is terrible, so very sorry for you. I’ve had my moments. Sometimes I just stand tall, drop my shoulders, relax, breathe out the BAD feeling, and breathe in the good. Fill yourself with good nourishing thoughts, remember all the good things that happened to you today, never concentrate on the bad past, it’s gone…leave it behind, go forward. I’m not religious, but I do think there is a power to help us overcome. But I have not walked in your shoes, what works for me might be just silly to you. I understand. I did not get my optimism overnight, it can be a difficult road.
Sorry to hear that you are not feeling well. As far as the dry mouth, I started using Prevadent toothpaste prescribed bymy periodontist. It has helped with the dry mouth to the point now that i find myself drooling. I used to chew a lot of eclipsepeppermint gum. I have tons of biotene toothpaste and mouth rinse but have never really used them. Maybe over time these products work. My perio keeps on gving them to me. I have had the dry throat a few times. My accupuncturist who is a physician with UCLA East West suggested eating melons and Asian pears. I read in a magazine that you can put a slice of cucumber at the roof of your mouth to stimulate saliva but I have not tried it.
Has anyone else used Prevadent?
My rheu told me that I can eat anything I want so I do not know of any food restrictions for SS. Thoughts on this
I use Evoxac at least two times a day. Take one in the morning, one at bedtime, and one or two if I need it during the day. y -- I find it is very effective. I don't talk much during the day in my job, but if I need to speak or I am in a meeting, I'll usually take an Evoxac. I also take one before I sing, or if I'm going to be outside in the sun or walking a lot -- situations where my mouth would usually get dry. I've used Evoxac for years and find that it works pretty well. I also chew a lot of gum, and I'm never without a water bottle. I tried Salagen for a while but it made me really sweaty so I stopped using it. Every so often I will use Xylimelts at night -- they help keep my mouth moist at night. Good luck finding what works for you!
Thank you everyone for thoughtful comments. I have not thought about cucumber… But it might work. Has acupuncture helping you ? I have gone to the acupuncture for 5 times so far… I have not seen any results yet… But if any of you guys know good acupunture who are good for autoimmune, would love to know…
I take evocac 3 times a day and it’s helped a lot.I also use xylimelts before bed. They are small lozenges stick that to your cheek or gum or tooth. They help so I don’t have to get up during the night to drink water.
Sarah, thank you so much for your reply…
I have not tried med yet But I think I really want to try now… It’s been so just hard to cope it and so depressed.
Hi there Rinrin, it sounds to me that it's time to put yourself in the hands of your doctor and follow through with some medication that might help ease your symptoms and manage your Sjogren's. Complimentary therapies such as acupuncture can often work well alongside medication but very rarely replace it. Things like Mindfulness Meditation is also helpful for managing anxiety and depression here is a link to the great Frantic World site where you can listen to and download some helpful guided meditations.
As others stated try xylimelts they work very good.
Yea I have tried xylimelt… How is medication works for u ? Side effect how long does it last for u and all that.
I just want to know before I started