I am just back from John Hopkins Sjogren's Center in Baltimore. It was suggested that I give pilocarpine a try even though I am Asthmatic. I am so frightened right now. It is my understanding that these are the only drugs that help the dryness.
What do you do to prevent the mouth thrush if you can not take one of these drugs? It seems that I am allergic to almost any drug manufactured. Even normal drugs to treat the thrush. Antibiotics also
Dr. Thomas Grader-Beck said that I do not have thrush but definately have candidia in the mouth.
This disease is progressing so fast I am at my wits end. I have lost 30 pounds since August Any one else who is able to prevent thrush without taking one of these drugs?
I have been usind pilocarpine for the last 5 months but I'm stopping using as Iget a sudden rush of saliva on one side of my mouth then nothing. Although without it I have no saliva my mouth feels better without it.
I also eat natural organic unsweetened yogurt everyday, this seems to help with the thrush. Have faith and hope that you can get through this, I know at the moment it seems like you can't, but hold on <3
Hi
I also have asthma. I found that rincing my mouth with cool water after using my inhaler helps prevent thrush. Yogurt has also been a big help.
Hi Purplebutterfly,
Thanks for the suggestion. Are you able to take Salagen or any of the drugs to help with moisture? I owe all of you an apology for the downer I am on right now.
Did see the post from SK and promise to be more upbeat or at least not post depressing stuff in the future.
I would be interested in what you do to get some moisture in your mouth if can not take pilocarpine.
I use biotine mouthwash right now I have to be really careful following the directions. I see my rhuemy in a couple of weeks.
Every body gets down. Most of us are on something for depression or see a therapist. Are you going to try one of the new meds?
I'm not sure. My asthma is not very stable right now. Have you tried Salagen or the other moisture helper? Is your mouth very dry?
I have to see an a Dr. next week to check my adrenals......
Yup, I know I sure could use a shrink right now.
I am computer illiterate and have a hard time finding my way around the site. From what I can tell I can not chat unless I make people "friends"? How is that done?
I have been oil pulling with organic coconut oil since last week, swishing organic coconut oil around in my mouth for twenty minutes each day. I have only experienced minor thrush but one of the many benefits claimed by proponents is that it has anti-fungal properties and helps with thrush.
Too early yet to tell if it's doing anything beneficial for me, but - hey- you never know!
Liz
I tried the oil pulling and thought it helped but my upper bridge which is hanging on by a thread kept falling out and needing to be put back in with the usual temp. cement. The dentist says all the top teeth are infected and need to come out. Nothing to do with SS just periodontal disease for many years. Actually last time was comical as I was speaking to a doctor and it kept falling out. I would say excuse me and turn around and jam the thing back in my mouth to finish a sentence.
Wonder if a little bit of coconut oil on the tongue would help the dryness?
Hi
On the bottom of the screen you should see main room if you click on it you should be able to chat their is also a tab at the top of the page. It will show everyone on line so just type your message and hit enter some one will see that your in chat and it may take them a minute to answer
Hi,
Thank you! I will check it out...You have been more than kind.
Hi,
I’m new to this support group. I hope that I can contribute in a positive way. I too have dry mouth. I’m on Cevimeline and it works almost too good. When I wake up, my pillow is all wet. However during the day it’s great.
I too have asthma, doesn’t seem to aggravate it, yet. I’ve been on it for about a year.
Good luck!
Hi TweetyGirl,
Do you use just a rescue inhaler or also a steroid inhaler? I graduated a long time ago to a steroid inhaler which of course is not good for the mouth either.
It's great that the drug works for you with no side effects.