I saw my ENT today. He dilates my parotid salivary ducts every 6 months. He usually can get a little saliva flow. Today, nothing out of the parotids. He also tried the ones in the front below my tongue for the first time and NOTHING!
I'm so depressed because I'd been counting down the days to the appointment in hopes that he could help me some.
Anyone have this happen?
He prescribed Salagen and I just took my first dose. Nervouse about side effects.
Can I expect any help from Salagen if the main salivary glands aren't working?
Thank you for any help you can provide!
Debbie
Hi Debbie-
I'm glad you're finding treatment and drs that take you seriourly! I've never had a parotid anything by my dr. I do take Evoxac though and it is a big help. Salagen did help me, just that the Evoxac worked better.
We can't tell you what to expect from the drug until you try it and see what happens. I suspect after several doses, you'll be able to tell us if you think it has worked. Lucy
I have very little experience as I am a "newbie" from April.
My function was almost entirely shut off I believe. I would chew gum and it would just stick to my teeth and not do anything and have to be scraped off piece by piece.
I got salagen in June (7 weeks?) after it being "shut off" one day when I was sick. I had to use spray saliva and the gel and all that other stuff into July along with a xyliol logenze but I would talk without my lips sticking to my teeth and not pronouncing words properly.
My parotid was the worst of all as I couldn't eat starch or starches easily. I would chew them into gum.
In August it got much better but not great. By September it was quite livable, except at night and when I was outside, etc.
At some point after October and plaquinel, I began to be able to eat without drinking and I find it is quite good now. My parotids are working again I think because I can enjoy grains/breads/starches and can actually chew them properly without having to dunk them in soup. Last night I ate roasted potatoes without drinking water! Well 4 wedges and then I noticed I needed a drink, pretty normal.
hth!
Debbie -
From what I've read, the latest research points to the fact that our dryness is caused by our antibodies binding to M3 receptors, which are responsible for saliva and tear production. That interrupts the nerve signals required to produce the saliva and tears, and causes the dryness. Then after enough time goes by that our glands aren't working, they become inflammed and eventually atrophy due to "lack of use."
Now on to salagen or evoxac. Those medications work by binding to the M3 receptors and stimulating them to work. Which is why they work so well. I've also read that typically sjogrens typically destroys no more than 50% of the glands, which leaves a lot of gland still in tact.
A lot of what I've read says Sjogrens seems to be a nerve problem (which makes a lot of sense to me since so many of us have nerve issues - tingling/buzzing/weakness).
Anyway, I hope this all makes you feel a bit better. The salagen or evoxac should theoretically help you!!