salivary gland damage permanent?

[keelton]

i am just curious, it seems like everyones symptoms get better and worse at times.  if the glands are damaged then how does it get better sometimes??   also have most of you noticed that they have gotten steadily worse over time? or did they stay the same.  I am terrified that my mouth will get drier.  i cannot imagine it! very scarey and depressing,   i already feel like it consumes me all day long, i cannot focuse on anything else.   does exovac help you produce real saliva??  how is this possible if you dont make any on your own??   I am so worried that i will have to quit my job,  i have been a flight attendant for 20 years, and going to work as you can imagine is miserable for me with the dry air.   

[cccourt1942]

First things first:
1) symptoms better and worse: Yes.  Don't know when your onset was, but symptoms wax and wane.  Before my dx I believed I was reacting to the weather.  Guess what? Since dx I can almost ("almost") relate 80% of my bad times to changes in weather-#1 culprit=rain.  As I grew older I learned weather affects a lot of people..young and old.
2) Damaged glands: good question.   I don't know that they get better. Personally,  I think I adjusted. Most people on this board say the saliva producing drugs stimulate natural saliva flow.  I believe info on the drugs state that as well.  In my case, I have one functioning major salivary gland.  It doesn't function much.  Because I continue to have the pain caused by sialadenitis is how I know my right parotid has something in there being produced in/by my body.  I am excited when the pain occurs as I know I must be getting some saliva thru that duct each day.  In the meantime, I use a large amount of pilocarpine per day:  7.5 mg three times per day.  I have been down to a total of 20 mg per day and as high as 25 mg per day, I believe the consistency of the saliva say in that parotid and my lower lip must be producing...as all of a sudden I have saliva.  This is manifested immediately by drooling at night.  During the day, I can feel  lots of saliva in my oral cavity.  And then, after I have decreased the pilo, as quickly as saliva showed up, it goes away.  I will increase it by 2.5mg as needed to get to comfortable state.  Now..is it "real" saliva?  I have called it artificial saliva since the get go.  In nearly 3 years , I have heard it termed like that one other time.  The rheumies will reluctantly go along with my description. 
3) I didn't retire early, I retired as soon as I could.  BUT...I continued to work contract, part time afterwards, in my profession until I was 71.  The disease was advancing but I didn't have a clue I had a "disease."  I would say to work as long as you possibly can.  A stewardess told me (this is in the old days when you got china dishes in business class) to order hot tea, don't use the tea bag, just breathe the water.  She said to cover the teacup with the saucer...then inhale again, repeat.  I was making 24 1/2 hour flights  with two stops for a minimum of twice a year..along with many other trips.  NO alcohol.  Drink water.  You already know these hints.  By now there must be more.  Your colleagues will help you have extra time to attend to these needs.  When I could no longer work, I looked back and was amazed at what I had gone through.  I still miss my professional work.  At least I'm old now. 
4) I can't say if I got "worse" over time as I was so old when I was dxed.  I do know that over my younger years, I would have these onsets which would stop me in my tracks...and within weeks, it would virtually pass.  I wouldn't be able to work, get out of bed, eat, function.  That happened (between about 45 and 65 about 3 times).  I took 2 months off one time.  Again, amazed once "whatever it was" passed, I would be very weak.  First I had to eat again, then regain strength, etc. 

Keelton:  remember: this is MY experience , with MY symptoms, with MY onset, with MY body, etc.  Your onset may be different,  your age, stage, symptoms, etc.  This is meant to be reference.  If I've learned anything about sjoggies, you can't generalize between or among us much more than the name of our autoimmune disease.  So many variances. 

Good luck, good flying, and good week end to you,
Sjoldier c3

[Jasper]

We are all different and, although we all have Sjogren's Disease and have many of the same symptoms, we are all to some extent affected differently in terms of severity of symptoms and response to treatment.  A lot of times it is a matter of trial and error to see what helps us.

I have probably had Sjogren's for several decades, although I was diagnosed only in 2013. I have had symptoms for decades and I had Systemic Vasculitis in 1993-94, so I clearly had Sjogren's at that time. The Systemic Vasculitis marked a change in my life. I never totally recovered and never had as much energy as prior to Vasculitis.

I would say that I have gradually worsened over these decades, but I did work up until 2005, although the last 5 years were part time. I had problems with fatigue, dryness, joint aches, etc. for years, but my symptoms did not get really bad until the last 5 years or so.

However, some of the symptoms do wax and wane to some extent. Some days I feel worse than others. Some days I have more energy and feel better.

I don't use Evoxac or Salagen. I take CoQ10 100 mg daily for dry mouth. Studies show it improves saliva production. I also keep my teeth and mouth clean with floss and paste. I take sips of water as needed and use MighTeaFlow products for moisture (lozenges, mouth wash, spray, lip balm). My saliva has actually increased and I credit CoQ10 and possibly other supplements for the increase. I also take Plaquenil and I do feel a lot better since starting Plaquenil.

The drug that has helped me the most is Rituxan. I started getting Rituxan infusions last February, 2 infusions, 2 weeks apart. I got my second set of infusions in August. I get 2 infusions every 24 weeks. Rituxan is a monoclonal antibody and suppresses B cell production, which we have too many of (B cells). It does not work for everyone, but it sure worked for me. It has improved almost all of my symptoms and it has increased saliva production as well.

Most of us with Sjogren's Disease still have functioning salivary glands. Even in the dryer people, studies show that about 50% of the saliivary glands are still functioning. The researchers do not know why we are dry as a bone even though we still have functioning salivary glands. The thought is that there is another problem in addition to the destruction of salivary glands.

However, since most of us have 50% of our salivary glands still functioning, drugs can take advantage of those functioning salivary glands and increase saliva production.

Are you taking any meds at this time? I looked back at some of your posts and it seems you do not yet have a diagnosis, or am I mistaken?  I would get the lip biopsy if I were you so you can get a diagnosis (if you do not already have one). If you can get a diagnosis, then hopefully you can get on more specific medications. You don't need a diagnosis for evoxac or salagen since you have a very dry mouth. But you would probably need a diagnosis for Plaquenil and for many other drugs specific to Autoimmune Diseases.

As new drugs are approved by the FDA you will need a diagnosis to get some of those drugs, especially the biologics and immune suppressants.

I hope you have a good Rheumatologist and I hope you can get some treatment and relief soon.

[keelton]

Thank you for the replies!   I did ask a doctor for exovac and he refused saying that the side effects were to bad.  Looks like I do have to get a. Biopsy just to get medication.

[katie1111]

Sjogren's is a progressive disease that worrying about the future won't help.  Remember, you will be "progressing" to, in that you will be learning to deal with your symptoms.  Learning to live with Sjogen's is really a matter of trial and error.  There are lots of products available and if one doesn't work for you, try another.  Symptoms do come and go.  It is challenging, but definitely doable.  Hang in there.

Katie1111

[gurs]

I personally dont believe they are damaged..just dysfunctional, from inflammation or other etc. When my allergies are bad, I get inflammed and super dry all over. Some days I tend to have more saliva and tears etc..cant explain it. I think its all inflammatory.

Jasper has excellent advice/suggestions. Alot of people take meds and supplements that tend to have a drying effect. I find this with most everything. Another thing is hormone changes....menopause a big problem for me.

Gursie

[MAT51]

Hi Keeton. As I explained to you in my prune fingers post - my lip biopsy confirmed Sjogren's as my primary disease but I was previously diagnosed and treated for RA. I think that, in my case, the lip biopsy was well worth the minor inconvenience of the procedure. I can't be sure of lasting side effects because my lips and gums are always sore, tingly and numb from nerve damage already but have noticed no exacerbation of this anyway.

Re dryness getting progressively worse - in my case it seems to go in phases and my throat is certainly terribly dry just now so I find swallowing hard. However I had a parotid ultrasound recently and it was absolutely fine so I know I produce plenty of saliva and my teeth and gums are in reasonable shape. However my mouth tastes awful.

My theory for why my teeth and gums aren't bad is that I've gone from being a mouth breather to being a nose breather over the past decade. A dentist once put the fear into my young son that his teeth would be rotten by his teens if he carried on being a mouth breather. I think this is when my own bruxism began - or maybe it was when the RA and small fibre neuropathy both began together. I use a mouth guard now and my teeth have been much better than they ever used to be since I've become a nose breather.

Re Jasper's point about medications - I had a very dry mouth at one point, when I was put on Cymbalta - but it stopped once I got off this drug.

Also I can't substantiate this - but I feel that it's about the quality of saliva we produce not just the quantity. In my case my protein/ inflammation levels are always very high - which my rheumy says is because people with SJS often have thicker blood than normal healthy people. So I have assumed that this is about a systemic dehydration which affects the quality of the saliva as much as the quantity? If it was only about the parotid glands then how would our peripheral nervous system be affected as a prevalent symptom of Sjogrens? The glands under our armpits and in our groin can equally be affected so it isn't just mouth and eyes that are dry in SJS. Hence I have really bad GERD, trouble swallowing, am increasingly hoarse and have chronic constipation and severe oral and vaginal thrush periodically. Also a very diffuse small fibre neuropathy,  disequilibrium and small vessel disease of the brain as part of SJS. So, like many here, the mouth and saliva production doesn't have to be affected much in order for  Sjogren's to be affecting the rest of our bodies. No do I think that severity of eye and mouth dryness are an indicator of severity of the disease itself or long term prognosis.

I know of people with minimal eye and mouth dryness who have non Hodgkins Lymphoma and people with a very MS-like presentation such as myself, for whom oral and ocular problems are the least bothersome of my issues.

[bluegardenia]

MAT im a mouth breather also and have your same problems, gerd, constipation etc but noticed that constipation is absolutely better since i drink more water due to sjs. also my parotids are in good shape so i wonder like u whats the problem and believe its a malfunctioning, up to today. my saliva is thick and little but the worse is my throat and many doctors told me thats because of reflux but i have reflux since years  and it did not give me any problem, i made lots of fibroscopies and they did not see any problem in my throat but i know THERE is a problem, im not crazy.

[MAT51]

Of course you're not crazy - we'd have to be psychotic to make up all this stuff!! But I can tell you that having a proper, indisputable diagnosis of Sjogren's makes all the difference. I no longer think of myself as doctor bothering or worry about what others think. So, although I could never recommend the lip biopsy to anyone in case it causes more physical problems and further uncertainty, mine has been terribly helpful and I'm very glad I risked having a numb lip for it personally  - I bailed out of having it done last year for these reasons.

Also a maxillofacial surgeon told me that there was little point getting it done as he doubted very much, from looking at my mouth, that mine would be positive. But even if it was, there would be no treatment for Sjogren's. But the oral consultant in my new dental hospital told me this wasn't correct and anyway my ANA was positive and my IgG and IgA both high which all pointed to Sjogren's. And she pointed at that I'd have clarity at last because the lip biopsy is pretty definitive. Each of the five salivary glands they took showed up very high positive so at last I can stop wondering why I have this or that symptom now. I am drinking loads but still constipated and the neuropathy is hellish. Whoever says Sjogren's isn't a multisystem connective tissue disease but just affects the eyes, mouth and vagina must be crazy - not us!

[cccourt1942]

Keelton: 
    The only two people I have heard that the saliva type meds should not be used were those who had lost salivary gland function thru chemotherapy.  In both instances, they had only lost one parotid each.  I know lots of people with SjS  on this forum who are unable to tolerate it.  Was the doctor who told you not to take it a Sjogren's knowledgeable physician?  I'm just sort of curious.  The version of the med I take is plant based. When I began taking it ...wow...my stomach took a beating.   I learned to take it in tiny doses and increase it with more tiny doses. It took me  1 1/2 years to get to a point where I was taking as much as the rheumy had recommended. 
    Not trying to talk you into taking a drug you don't want to, just asking about the kind of doctor who suggested the side effects were too bad. 
    Have a good day, Sjoldier c3