excess saliva before you started experiencing dry mouth

[keelton]

I have been suffering with excess saliva for the last two years,  i always assumed it was due to acid reflux, no explaination from doctors.  Now for the last few months i have been having extreme dry mouth , but occasionally i still have days with to much saliva!  it is so strange,  i was wondering if anyone else with Sjogrens presented this way in the begining,   I saw another doctor yesterday and he explained that it may be just like dry eyes that tear alot because they are so dry,  salivary glands are trying to over compensate by producing to much in the begining.  Now my symptoms are starting to make sense,  i have had dry eyes for years that would tear everytime i would go outside, and a mouth that had to much saliva. Now my eyes never tear and my mouth is horribly dry most of the time.   

[Judie P]

You are not alone.  Mine usually happen after I eat.  I do think it is what your doctor said, because there is no other explanation for it.  I believe this topic was brought up by someone about a month ago.  I will get a dry mouth periodically and then the excess saliva kicks in.  From my experience, whenever I post a reply, usually others will reply as well.  Hope you get a bundle of responses.

[SJSman]

Keelton,

Yes - the silent diluted acid reflux really complicates this, however, I did experience excessive salivation for the first few years that I was sick.  It got extreme.

My Rheumatologist at that time said that if you do have Sjogren's, then before the salivary buds are destroyed sufficiently to become dry, that they can initially become damaged and essentially go haywire and malfunction badly.  In the early stages of damage, the salivary buds can malfunction and produce excessive saliva, causing that problem that you are asking about.

I had a very positive lip biopsy when this was occurring, as well as consistently positive anti-SSB. 

There are many other things besides Sjogren's that can cause this.   The most common is truly excessive GERD, silent reflux.

Do you have a positive lip biopsy result?  If not, you might want to look for a cause elsewhere than at the salivary bud level, because the buds show abundant positive damage, meaning you would have a positive lip biopsy result, by the time that the early excessive Sjogren's-salivation occurs.

[keelton]

sjsman,

thanks for the response, i am seeing a doctor tomorrow about getting a biopsy done,   Hopefully i will know more then,  I guess because i have reflux as well as excess saliva and dry mouth and eyes,  i am leaning towards Sjogrens , i did test negative for the antibodies , but i have positive scleroderma antibodies,  so confusing, not enough symptoms for diagnosis for that disease.

[SJSman]

Hello again,

Did you test positive for both ANA and SCL70?  Just wondering. 

I hope you figure this out.  Walking around with long pads of paper towels between your teeth in your mouth is a drag - I remember that very well.   It is socially unacceptable in a work environment, as is not using a towel and drooling like some surreal nightmare fountain.

I remember speaking to you before, and I think we discussed your Scleroderma antibodies - that conversation got interrupted.  I think you were negative for SCL70 but positive for a sort of non-specific antibody that is associated with several different immune system disorders including Scleroderma, is that correct?

I hope your lip biopsy goes well and that it is negative when analyzed, although I wouldn't be surprised if it is positive. 

Having autoimmune illnesses is, erm, kind of an alternative lifestyle to what we all had planned.  I am sincerely hoping that you have a less severe course in the long run - that is still very possible given your current incomplete diagnostic results. 

I have been researching, and experiencing, Sjogren's and other autoimmune diseases for awhile now - I only recall ever seeing one other person talk about excessive drooling in relation to Sjogren's before this post, out of some huge number of people who were telling their autoimmune stories.  Counting me, you are number three - and Judie P is number 4!

[felpeyu2]

Hello. I am 44 years old, male, diagnosed 10 years ago. I had 4 strange nightly episodes with very big amounts of saliva. The first one was in my twenties (about 10 years before diagnosed). I spent the whole night with excess of saliva  (i remember i filled a glass of water). But it only lasted one night and there was no pain.

After been diagnosed with Sjogren, I had three similar episodes: only one night, a lot of saliva (filled a glass of water again), and big pain in the throat (difficult to swallow) reflux?, perhaps, i don?t know. When the day comes, the problem disappears.

My mouth is usually OK, i have dry eyes (sometimes very dry eyes) but not very dry mouth.

I associate this episodes with my illness, but i don?t know why it happens.

[keelton]

Shaman,  yes I tested positive for a very specific scleroderma antibody. RNA polymerase III .  But not enough symptoms for diagnosis.  It looks like I have a little of both.  But scleroderma can also cause dry mouth and eyes.  I suppose from fibrosis.  Tested negative for sjogrens so far

[SJSman]

Keelton,

As I recall, when we last got interupted that is what we were discussing.  I was just getting ready to post the following two sets of important comments about your antibody, if I did not do it previously.  I wholeheartedly agree that the RNA III antibody is a cause for concern and merits more testing - which is exactly what you are doing.

You already know all of this of course.  I am posting this mainly for other people, because I suspect some people might find this new RNA III antibody topic to be as interesting as I do.  Also, other people very likely may have interesting and informative comments about this.


SET 1 of COMMENTS:  THE GOOD CASE WHERE YOU ARE SIMPLY HEALTHY WITH POSITIVE RNA III

A positive result indicates the presence of measurable IgG antibodies to RNA polymerase III, but does not unequivocally establish the diagnosis of systemic sclerosis or other autoimmune disease.

The level of RNA polymerase III autoantibodies does not indicate the severity of disease in patients with systemic sclerosis.

The presence of immune complexes or other immunoglobulin aggregates in the patient specimen may cause an increased level of nonspecific binding and produce false-positive results with this assay.


SET 2 of COMMENTS:  THE CASE WHERE YOU HAVE SCLERODERMA WITH POSITIVE RNA III and NEGATIVE SCL70

Autoantibodies to RNA polymerase III antigen are found in 11% to 23% of patients with systemic sclerosis. Systemic sclerosis patients who are positive for RNA polymerase III antibodies form a distinct serologic subgroup and usually do not have any of the other antibodies typically found in systemic sclerosis patients such as anticentromere or anti-Scl70. Numerous studies have shown that systemic sclerosis patients with anti-RNA polymerase III have an increased risk of the diffuse cutaneous form of scleroderma, with a high likelihood of skin involvement and hypertensive renal disease.
-----------------------

felpeyu2 - Welcome to this Forum.  I hope you find help here!

[Orcas55]

Keelton, I also have excessive saliva, cups each day for the last 3 months. Occasionally it will go dry for a single day. I have not been diagnosed with sjogrens but suspect based on many other symptoms I have it. I had an endoscopy and no signs of acid reflux although I  have suffered from this in the past. No one takes me seriously with little help along reducing the saliva. I also have dry tongue and throat at the same time. Did anyone find any treatments that help the saliva?