Confused on the mechanism of Sicca

[alwaysimproving]

Hello everyone,

I have a question on the mechanism of Sicca manifestations of Sjogren's, particularly Dry Mouth and Hypo-salivation.
I am in the process of being diagnosed - my primary complaint is of Xerostomia.

So in December I had about 12 days of severe dry mouth. Maybe not radiation dryness or full Sjogren's dryness, but maybe 10% of normal moisture. Enough where I could get some Saliva with an ACT lozenge or gum, but without it everything would stick to itself. Even with the lozenge I could not sleep.

But then.... all the symptoms completely disappeared. For months.
I only returned to having symptoms about three months ago. They were much worse in December, though now I am worried because I feel no saliva at all coming from my Stensen's duct. I can draw up some saliva from the bottom of my tongue but not the cheeks.

I thought the Sicca symptoms were from destruction and fibrosis of the glands. If the glands were destroyed, surely they could not regenerate in such a short period of time. Which leads me to believe that the glands must be not destroyed. So then what is causing hyposalivation? Does anyone else even have this?

What do you guys think?

[cccourt1942]

Dry mouth is caused by your thickened, compromised saliva from the attack from your white cells.  (Sicca means "dry")  The lymphocytes are so thick it is difficult for them to exit the salivary glands ducts.  Thus, dry mouth.  In my case, five of my six major  salivary glands have atrophied.  Actually..in the last 6 months I have had some pangs in my left parotid....  Maybe it is just sluggish.  Not everyone has their salivary glands compromised this badly.  I am old.  Some profess the saliva meds improve the flow of the saliva.  I consider the meds as "artificial" saliva for me at this stage.  The saliva I have in my oral region is not coming from all my major  saliva glands.  My lip glands are swollen at times..and I think maybe blocked...but other times not. 

I have been taking 25mg of pilocarpine for about 9 months...maybe more.  It took me a long time to work up to taking that much.  A couple of days ago is the first time I feel as if I had a reaction to it.  I cut back yesterday and today to 20 mg.  My mouth doesn't feel good..but I'm not woozy and dizzy. 

You do realize you have sub lingual salivary glands...and THEY WORK for you.  You described drawing saliva from the bottom of your tongue!  Yea you.  You can get a lot of saliva from those.  You are adjusting to likely having little to no saliva from your parotids.  I don't know that.  I think that.
Good luck AI,
c3

[alwaysimproving]

I should specificy I can draw it out from my sublinguals only stimulated or with pilocarpine. And for some reason it is very watery, not thick. Well I suppose you're right about that last part but what is to say I won't lose the sublingual function in another flare? And when I had this in December i still had lost function from everywhere...and regained it in the interim.

Also if it's blockage, wouldnt there be swelling? I've had no parotid gland swelling.

I would also think it takes a long time for really serious damage to set in... Based on members like Chris achieving remission. He's not the only person I've heard of losing sicca symptoms after a while, a friends mother got remission after following the autoimmune diet from that one Dr. Myers book. So clearly the damage is somewhat reversible if caught early enough... It's just a matter of finding out how.

[Jasper]

"I thought the Sicca symptoms were from destruction and fibrosis of the glands. If the glands were destroyed, surely they could not regenerate in such a short period of time. Which leads me to believe that the glands must be not destroyed. So then what is causing hyposalivation? Does anyone else even have this?"
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In most people who have Sjogren's, at least 50% of their salivary glands are still intact.

The production of saliva is not just a function of the salivary gland. In order to produce saliva a person needs to have functioning saliva glands AND functioning salivary "units."  The "unit" is composed of the salivary gland (water, mucin, protein), mucosal surface, salivary nuclei (with cortical input ..... ie central nervous system and brain), and blood vessels (water, nutrients, hormones).

The functional circuit in Sjogren's Disease involves: mucosal surface (inflammatory cytokines and metalloproteinase), midbrain Vth nucleus (lymphocytes and glia cells), vascular (CAMS, iNOS, and chemokines), brain cortex, and the gland (lymphs, cytokines, metalloproteinase).

So, the bottom line is, the non-production or decreased production of saliva can be caused by a malfunction or interference with any part of the "salivary unit."

This would explain why the amount of saliva produced can fluctuate and why some drugs or supplements may increase saliva production. In addition, if some part of the "saliivary unit" is under attack by increased numbers of cytokines (or other factors), then the saliva production will decrease while it is being attacked and increase if the attack can be interrupted or diminished.

If you go to Dr. Robert Fox's home page and look at his list of presentations, you will see that he discusses this entire process in detail in several of his presentations. Each presentation is somewhat different so I would suggest looking at all of the slides in each presentation to get the best understanding of how this works.

You can skip to the slides discussing the salivary glands, but I think it helps to understand as much as possible about Sjogren's Disease, which is why I think it is advisable to look at all of his slides.

http://www.robertfoxmd.com/

Go to the folder that is labeled "Presentations"

His articles are also excellent. But I like the presentation because many of them are fairly recent and they are aimed at a professional audience, which means they are quite detailed and technical, but still understandable.

[Jasper]

PS: I just wanted to add that I produce a lot more saliva now than I did 3 years ago when I was first diagnosed. I used to need water at my bedside and I always carried water with me. I was constantly drinking water. Now, I no longer need water at my bedside. Now, I usually do not wake up with a dry mouth. Now, I can go hours without drinking any fluid. It is a very noticeable improvement.

I do not take salagen or evoxac.

When I was diagnosed, I started taking Hydroxychloroquin, CoQ10, more Omega 3s, and several other supplements, many of which affect nerve function. It is my belief that all of them are probably influencing my increased saliva production.

Studies show that CoQ10 increases saliva production in over 60% of people. Hydroxychloroquin is a DMARD so it may be helping. The supplements that influence nerve function may be helping with the nerve function aspect of the salivary functional unit.

PSS: I have been taking Hydroxychloroquin since Sept. 23, 2013 and continue to do so.

[alwaysimproving]

Great article, that doctor seems dedicated to finding out more about Sjogren's and its thearpies. Not only that, he is highly educated (went to Harvard!).
We need more guys like him in the field.