Is tooth loss unavoidable in Sjogren's?

[LilliaT]

I have read so many horror stories online of people with Sjogren's suffering rapid and extreme dental problems -- with their teeth crumbling, breaking off at the gumline, sometimes in a matter of months.  I have to confess that, right now, this is the part that scares me the most about Sjogren's -- the idea of my teeth crumbling, and being afraid to speak or smile in public.

My dentist tells me that she has treated many people with severely dry mouth (mostly patients whose salivary glands were destroyed by radiation -- she has not had a Sjogren's patient) and assures me that most people are able to keep their teeth in decent shape.  The rheumatologist, too, assured me that most of her Sjogren's patients live reasonably comfortable lives and seemed to have fine teeth.  I truly don't know what to believe.  Are they just giving me false hope?  From what I read online, it sounds like severe dental decay is pretty inevitable even when patients are conscientious about dental hygiene.  (I've always taken good care of my teeth -- I floss well and use a Sonicare, and have a bunch of good rinses and xylitol products -- but I'm wondering if my teeth are doomed anyway.)

If you've managed to keep your teeth in relatively good shape despite the dry mouth, would you mind posting here?  Also, if you have any specific tips or suggestions for someone just starting out on this journey, I would really appreciate hearing those as well.   (I still don't have an official diagnosis, but the dryness just keep getting worse, and my ANA titer has gone up from 1:80 to 1:160 (nucleolar).)  Thank you.

[jazzlover]

Depends upon how well you take care of your teeth and how dry your mouth is. I've had this quite awhile and I don't have any root canals and don't plan to have any. I will have them pulled before I will do that.

I am 65 yrs old.

[Nomad]

Mine haven't been too bad. I've had a few issues but they didn't seem Sj related.
As soon as I found out I had Sj Synd. I changed from getting a prof. cleaning twice a year to three times a year.

I use Biotene toothpaste, drink lots of water and chew sugar less gum (briefly) or suck on a sugar free lemon cough drop when my mouth is very dry. I also use Ubiquinol tablets which they say helps a little with dryness. I floss often, but not daily.

I'm not sure if it helps but it might...I take lots of vitamins some no doubt help with bone formulation and might help teeth a tiny bit.

My top suggestions are the Biotene toothpaste and professional cleanings every four months (like clock work!)

[Nomad]

I would feel bad if I didn't mention that I met (over the phone) a woman with Sj Stndrome well into her eighties. She had some very bad dental problems and got implants.

Then she did much better. She did what I said in my post above plus :
1. Along with daily flossing, using a gentle water irrigator several days a week.
2. Cut back on sugar
3. An occasional indulgence of a gummy vitamin when mouth is very dry. She says this helps the dryness.

She is doing much better now. Much more normal etc

[Kathy57]

Hi,

I am 59 and I am trying very hard to protect my teeth.  I brush and floss everyday.  I sometimes floss up to three times per day, depending on what kind of food I have eaten.  I bring little dental floss pics with me in my purse.

My dentist takes good care of my teeth and has ordered Prevident 5000 toothpaste for dry mouth.  It is extra fluoride and I use it right before I go to bed after I brush and floss my teeth regularly.

I also use a tongue scraper once or twice per day and use Xylimelts at night when I'm sleeping.  I did have to have a crown repaired this year because it developed a small hole but I had the crown for years.

My dentist thinks that I will be able to keep my teeth if I continue to take care of them.  I do feel that because my mouth is so dry that they are more fragile and at risk.

Don't give up!

Kathy

[cccourt1942]

Lillia:
    According to the two dentists I have had since Sjogren's dx, my teeth are an anomaly in relationship to the disease.  The number one reason is the last 6 to 8 years prior to dx, my teeth discolored.  Quite unattractive.  Well...I am 74.  The discoloration occurred after age 65.  I contemplated veneers...which you know --quite expensive.  I was still working, and it was kind of important to me (teeth appearance that is) but just didn't do it.  After SjS dx, I was told not to do anything such as implants, false teeth, veneers,  anything.  The main reason (and supported by stories on this particular site) is once teeth begin to break, break down, the jaw bone itself can (CAN) deteriorate.  The problem lays there.  This is MAJOR reconstruction.

Both those dentists cannot figure why my teeth (which were discolored due to bacteria in sustained dry mouth, particularly at night) didn't deteriorate completely. Actually, they say genetics.  Both vowed  their wish for me is to die with these teeth and believe I should.  I recently saw an Endodontist and he was amazed at the basic condition of my teeth at the gum line.  I have just had my second crown.  One at 73 and one at 74.  The clinic I use says I am the oldest patient to have undergone their FIRST crown at age 73.  Even my dentist (in her mid 30s) has one crown. 

So...I'd say:  look at your parent's teeth...siblings' teeth, etc.  And pray.    I am a speech therapist, and years ago (due to discomfort) I MADE myself sleep with my mouth closed.  I continue that now.  If you can learn to keep your tongue at rest on your palate, you can train yourself.  I knew NOTHING about bacteria growth in dry mouths.  When I learned, I was astonished.  Though mine was a result of sjogren's, I could have learned (since I have no nasal or septum structural probs) to keep my mouth closed at nites a long time before. 

Good luck,
Sjoldier c3

[warmwaters]

There are too many factors to give an easy answer. Your baseline, family history, and external factors are all part of what will influence the outcome.  I think the best bet is to take very good care of your teeth, and hope for the best.  Work with your doctors and dentists to help keep your mouth moist.   If you can find a dentist who specializes in Sjogren's, work with him or her.

Ava Wu is one of the researchers closely involved in Sjogren's dental research. I'm providing a link to her page as it lists a lot of articles related to Sjogren's and dental care. These are medical papers, so they are fairly complex reading, but if you're the sort of person who enjoys that, you may find some useful.

https://www.ucsfhealth.org/ava.wu

I had dental issues well before I was diagnosed with Sjogren's.  Looking back, they may have been an indicator, but no-one put it together at the time.  We're all so different.

[SjoGirl]

Lilia, Your dentist is correct, most people with SjS do not have significant issues with their teeth. Even before I started Evoxac and still had pretty major dry mouth my dental check ups were good. That said I was very good about taking care of my teeth and still am.

It's important to take care when reading about Sjogrens, it's a disease that affects people differently and many of us have multiple conditions (some of those conditions cause bigger issues than Sjs). Only about 5-15% of people with SjS have the most severe cases.

[LilliaT]

Thank you so, so much to everyone who has responded -- with encouraging words, with personal anecdotes, and/or with words of advice.  I've read these responses so carefully.  Although I know there's no knowing what the future holds, and how this will progress, at least I feel hopeful again (even if it's a cautious, guarded hopefulness). 

I can't even express how much gratitude, admiration, and respect I have for the people on this board.  I'm often in the grips of the worst (and most self-absorbed) anxiety when I post here, full of panic about some new symptom or test, and I always receive the most helpful responses.  Thank you.

[warmwaters]

One of the hardest things about getting something like Sjogren's is all the unknowns that it opens up. Will I have problems with my teeth? Will I be able to to work as I do now? Will I get a rare side effect from a medicine? And on and on.

Before they run into a life changer like a chronic health problem, most people feel like they've got control over much of their life.  It may be a bit of an illusion, but there's a feeling of "I know how things are going to work (mostly)".  One of the toughest things is learning to deal with the anxiety of all the "what ifs" that could happen, and not having any good way to predict how likely they are to happen to you.

Even thought I've been dealing with this for 7 years now, and worry a lot less than I used to, I still get times when I'm worrying about some aspect of my health, or my ability to cope with the consequences of my limitations. This year I tried a medicine that if it worked, could have a lot of benefit, but also had a lot of risks.  And in the month or so before I started, I swung between great excitement that I'd be feeling better, and fear that I'd have one of the side effects.     (BTW, didn't get much improvement, but also didn't suffer any severe side effects, either.) 

Glad we're a help. This is one of my best places to go to when I need help.

[P.Trish]

This is what I do for my teeth (was dxd 5 yrs ago for sjo)
-cleaning every 4 months
-biotene toothpaste, mouth rinse
-sonicare toothbrush
-water pic
- brush & rinse often
-apply fluoride gel (nightly) 5 min
-wear mouth guard.
Just had a cleaning & the yearly full mouth X-rays. I always dread going in because -despite my obsessive  hygeine, the tarter always builds up & my teeth look bad.

Before the hygienist started the cleaning, a dentist came in with good news, 'No cavities.' Then, he looked into my mouth & said 'You must drink an excessive amount of coffeee & tea'.
(Sigh) I don't drink coffee or tea.
The teeth look much, much better after the cleaning & although I know it won't last, I am grateful.
We keep going!
By the way, the hygienist was familiar with sjogrens. The dentist was not!

[LilliaT]

P.Trish -- Thank you for posting this.  Could I ask what fluoride gel you use at night?  Is it something your dentist gave you, or something OTC?

Warmwaters -- Thank you for your kind email.  You've articulated exactly how I feel right now.  I sometimes feel paralyzed by these unknowns (about my teeth, about whether I'll be able to keep working, about whether I'll be able to be a good mom to my daughter).  I also have a lot of fear about medications and side effects.  I'm not on anything yet, but I imagine Plaquenil may be the logical next step -- but I am really frightened by the potential retinal toxicity effects.  (I have a sister-in-law who was prescribed Plaquenil in connection with problems from Lyme Disease, and she has retinal thinning even though she wasn't on it that long.  At the same time, my symptoms seem to be getting worse pretty quickly, and I'm afraid that maybe I need Plaquenil to have any chance of slowing further progression.)  There's so much uncertainty, and my fear of what could happen in the future is almost worse than whatever physical discomfort I'm actually feeling. 

I tell myself that no one's future is guaranteed, and that I have to avoid falling into a pit of self-pity.  But I'm still in this stage where I can't seem to believe that the future I thought I had isn't going to happen.  I imagined happily watching my daughter grow up; I assumed I'd work and spend time with friends and travel and one day retire, and that I'd have only the usual worries about money or parenting decisions or job satisfaction.  I just want to do everything I can to make sure at least parts of that future are still possible.

[P.Trish]

Lillia, The fluoride is by Colgate 'Gel-Kam' - not a prescription, but drugstore had to order it. When I ran out (& it will last a long time) I decided to check on Amazon.  It is there & it is a lot cheaper.
I do use gel trays (but one could prob just dab it on) for the 5 min application; no eating or drinking for 30 min, after.
I hope your week is good.

[cccourt1942]

Lillia,
   You asked PTrish ..I understand..but wanted to say I use Clinipro which I buy thru Amazon.  Used to get it from my dentist.  I only use at night.
    Also, the discoloration PT is concerned with is what happened to me (I presume she is talking discoloration as dentist said she "must drink...coffee...tea".  That's what happened to my teeth the last 6 or 7 years before my dx.  I saw a dentist twice a year for cleaning..maybe one cavity...but the discoloration progressed.  The answer didn't come until after dx. The secret is the closed mouth.  I use Biotene gel to keep my oral cavity "coated" at night.  I know one woman who wanted to get the sleep apnea mask.  Also..one of your responders said they used the mouth guard.  THAT...to me...filled with biotene gel...would be effective at restricting the bacteria's onslaught on your teeth. 
     Sorry to burst in on you all.
c3

[P.Trish]

Thanks for the tip cccourt! I use a mouth guard; now I am going to use the biotene gel at night.

& please 'burst' in! The more advice, the better:)

PTrish