Dental issues and questions

Ok in reading the discussions on dental issues, I too am having huge problems with my teeth being loose and decaying. Does anyone know if dental implants will work with ss? I have 2 previous implants that are still very sound, but I’m now facing the prospect of having to get a few more, plus I’m trying to survive on disability and have no idea how I’m going to pay for them, and one other thing does anyone know any dentists in the tampa or cincinnati areas who is familiar with ss and treatments for it. I’ve got crossover autoimmune things, but my dr doesn’t seem to be to concerned about the ss. I use re stasis eye drops, but as far as my dry mouth goes, she doesn’t seem to have any answers. Thanks guys, bens friends have helped me so much and answered so much for me. I love being here and all the support I’ve found

I have to step out for a moment. However, I am happy to share my story with you. Perhaps I can be of some assistance… I hope. However, unfortunately, I don’t know much about implants with Sjögren’s. I hope someone replies that can advise you on that matter. Be back soon.

Hi. I have lupus, a severe case of Sjögren’s, and other autoimmune issues. I put off going to the dentist for nearly two years and when I recently when back I was horrified. They found at least one problem on almost every tooth. I have receding gums, a ton of cavities, need two root canals, have to have four teeth pulled, and have my chipped teeth fixed. My dentist recommended I go to the local drug store or amazon and buy all the Biotene products I can find. It’s not inexpensive , but far less expensive than having even more dental work if it helps. Right now I’m using the toothpaste, the mouthwash, and I ordered the mouth spray and gum. We’re hoping this helps. I’m also going to try oil pulling with coconut oil. I don’t know if it really works, but I can’t see any harm in it. The part that I feel is so unfair is the expense of dental work. I have insurance through my husband’s job and Medicare from being on disability, and I’m still spending a small fortune trying to tackle these issues. I wish I knew more about implants. If the two you have are doing well, perhaps others would fair well. I’m not sure. Perhaps ask your rheumatologist if he/she knows of a local dentist who is familiar with Sjögren’s. One ill informed dentist I went to insisted I was eating sweets all day. I was angry. My current dentist has a grip on my situation, but even he has asked me to do some research and tell him what I come up with. I don’t know if any of this has helped. I wish I had more answers. Hang in there and keep us posted as to what you learn and how you’re doing. Best.


I'm so sorry you're having a mouth full of problems - no pun intended!

My mouth is super dry. When first diagnosed with SS, I did not know how to care for my teeth. Having been given some suggestion by a great dentist, I now floss after eating anything (as a byproduct, this cuts down on caloric intake :) ), brush after eating anything (if possible), if can't brush, wash mouth and teeth well with water, chew gum sweetened with xylotine, and have teeth cleaned every three months. The mechanical action of chewing helps salivary glands put out the small amount of saliva left. The one chewing gum that helps with saliva production for me is Trident Layers - Strawberry and Citrus - only this flavor - the other flavors have no effect on saliva production. When I pop a piece in my mouth and chew down, I can feel a small squirt of saliva-----not much, but I'll take what I can get.

Before bedtime, I brush, rinse and squish (is that a word?) with Peridex (a script - antibacterial), and rinse with Biotene mouth wash. Also, if my gums are participating in a flare, I put some deadening gel on the gums. (My dentist orders it in for me.) The Biotene mouth spray is really good to use during the day to combat the dryness. I know......all this costs money....but seems to be working for me. My two small victories with my teeth are two checkups with NO cavities!! We folks with SS will take our "wins" and jollies when and wherever we can get them.

I do hope you can find some compassionate dentist/specialist who will work with you on getting your teeth problems corrected. You are in my thoughts and prayers!


I brush after my three meals, but no more than 3 times a day. So I don’t eat between meals.

I use Squiggle toothpaste - first with a regular soft toothbrush. Then I floss with reach gum care and floss precisely according to directions, then I use GUM Soft Picks… about 4 picks each time. I scrape my tongue and then do a thorough final brushing with my electric toothbrush. Depending on what is going on with my mouth I may use a special rinse. Every three months I have a deep periodontal cleaning by my outstanding hygienist and then my dentist checks everything. He does prescribe certain meds if I get thrush or canker sores. I have loads of crowns and many fillings from my younger days (now 70), but I still have all my teeth and doc says gums are in good shape. I take 4 pilocarpine daily for the dry mouth and as needed use XyliMelts in beteeen if my mouth gets dry. No sodas or sweetened drinks. No candy. Very limited other sweets like pastries.I take 500 mg Valtrex twice daily to ward of canker sores. I also try maintain enough alkalinity in my diet (vs acid).

This all works for me with regard to my teeth. I sometimes feel a little overwhelmed by all that is involved in order to manage all the SS symptoms. But then I just try to think of all the positive things in my life …and they are many.

I hope there is something here that might help you a bit!

Hello Wendy,

I hope you had a very good birthday, though I'm sure these dental problems were NOT on the wish list when you blew out the candles!

I think a consult with an oral surgeon is an excellent idea! They really know their stuff! It is worth every cent to have the peace of mind of their expertise, and IF they do not feel like you have the right dentist for the job, they will point you in a better direction.

I did this before having all of my upper teeth pulled at one time by my dentist in his office, and he told me that my dentist had made the right call, and that he had ever confidence that he would take good care of me, that it was not necessary to go into the hospital to have this done.

I chose NOT to have my jawbone rebuilt for implants, but he would have told me his opinion on that.

The biggest change that took place for me was using a sonic care toothbrush and using Biotene, however they have changed the formula, and everyone here is trying Squigle, as it seems to be more like the old Biotene.

Hope this helps, I have been in your shoes.

Wishing you well,


BTW, I love my dentures, but just broke a piece off, so need a new pair, the grinders are worn off anyway! Fixodent or Polygrip are my other best friends, besides my dentures!

Just thought of something. I splurged and bought three copies of The Sjogren’s Book from Sjogren’s Syndrome Foundation. I kept one for myself, but gave one to my dentist and one to my Primary Care doctor. They were pleased to learn more. They are great doctors, but pretty young so were not very familiar with SS. All my other docs are very familiar with SS. You could probably check out the book at your local library or maybe it could ordered from another town. I’ve learned a lot through that Foundation. That along with this very supportive group of fellow sufferers bring hope and understanding into my life. I hope it helps you,
Hang in there!!!

I have lupus and SS. Two years ago I had a very bad dental office make mistakes in my mouth that led to facial nerve pain…or atypical Trigeminal neuralgia. It seemed like I went from one Satanic dental office to another. I had a root canal and then the tooth was pulled. When the tooth was pulled, the dentist put in a graph. My body reacted negatively from the graph alone! This is done in preparation for a future implant. I developed a fever that would not go away. My rheumy took a ridiculous amount of blood work 12+ vials looking for infection and non was found. I was put on multiple antibiotics, sometimes two at a time. The fever continued. I had the graph removed and the area biopsied. No infection was found. however, the fever abated when the graph was removed. I know for me, by body does NOT like foreign objects imbedded into it. I believe the fever was an autoimmune reaction.

My bloodwork for lupus is active again and the SS is ever present. I personally am very hesitant to upset the apple cart.

For the first time in my life, I am off of sweets.

As a side note, there are disposable toothbrushes. They come in plastic wrap with a tiny bit of toothpaste in them. You keep them in your purse…can brush immediately after eating…for example, at a restaurant. I too use Squiggle toothpaste. I don’t do Flouride treatments and only use Flouride mouthwash on a rare occasion. I think it is helpful for teeth, but harmful for AI illnesses. So, I use a minimum for my teeth and that’s it. I think good hygiene, getting off sweets, a good dentist, plus perhaps keeping the mouth moist…might be our SS salvation.

To keep my mouth moist, I am always sipping water and I use sugarless lemon drops. If the problem worsens, I would consider a prescription for this.

I would consider trying the implant if it is in a very noticeable position and your health is good otherwise…but you need to find an outstanding oral surgeon with tons of experience. If they aren’t in a particularly noticeable area or if you aren’t feeling all that well…I would get a prosthetic of some kind.

PS…I’m so curious about the root canal controversy…so many people now say they are very harmful to the body…and that they always retain infection/decay.

I'd love to know about root canal's too. I have had so many dental problems through the years, but didn't get a SS diagnosis until 7 years ago. Once I had a root canal and the root reabsorbed, whatever that means, but the dentist hadn't ever seen it happen before. Now I wonder if all my dental issues were related to SS.

Hi Nomad,

I am not an expert on any of this, as I've never had one, but my sister-in-law had a root canal and TN started immediately. My brother and husband had root canals done and had incredibly bad infections from them. Surely there are others who had no problems at all?

Not sure if there is a right or wrong answer, but I am so very sorry that you have TN, it has to be debilitating! I could not possibly be as nice as most of you folks are if I had to deal with that yet!

Wishing you well,


I wish I had a nickel for every dentist that has uttered the words “never seen that before!” perhaps they are untruthful or taking risks of some kind. Lots of weird experiences for me re dentists and I’ve heard several as well.

Thank you SK. I just had 24 hours of CRAZY TN pain combined with a new dx if ON and this time I did get grouchy, but try very hard not to.
ON/Occipital Neuralgia

PLEASE, PLEASE LISTEN TO ME!! I have the receding gums, cavities galore....EVERY single time. I live in Chas SC. PLEASE ALWAYS get a 2nd chance. So many people are willing to lie to make a buck. They could careless so sick or poor you are in life. I'm dealing with a situation now. A dental practice (3 different locations) took advantage of me. I believed them b/c I too had been away from the dentist taking care of my dying mom and ailing dad. The dentist offices ALL agreed that I had tons of cavities & needed 3 crowns ASAP! I was so close to losing my insurance b/c I was getting ready to go on SSD! That means, I was going to be a lot more poor than I've experience in my entire life. Long story short, another dentist 1 wk prior took state-of-the-art pics of my teeth. It ended up that he was extremely expensive. I just couldn't afford the kind of care that I used to be able to get with no problem at all. So, I went to this dental practice. After all my work was done, I had sooooo many new problems that I knew were from that dreadful place. I found a new dentist. He seen my professional pictures from the 1st doctor. I didn't have all of the cavities that they told me that I did have. My new dentist said "I don't know how they can sleep at night." He told me that they did really horrible work on my teeth. He just sat there staring at me for about 15 seconds. I knew that he didn't realize that the look on his face freaked me out...big time. So, now he's my dentist! He's honest and awesome. I wish so bad that I could sue that practice. But, if I did, I'll get totally stressed and then sicker than ever. I wish my nerves were steady enough to go through with it. The case is so bad that it seems like an easy case! At this point in my life, I'm just too emotionally weak. I have nothing to give mentally or I'll set myself back. I refuse to go backwards with my health. I wish there were Attorneys that helped people in my situation: ( Please get a 2nd opinion. This same practice told a mom that her HANDICAPPED son had 8 cavities. She went for a second opinion. This poor child had ZERO cavities! I've paid thousands & thousands of $$$$$$ to pay out....and that's not even the worst thing that they did to me. Many times I feel so embarrassingly helpless.

It's almost never worth it to pursue it legally...the lawyers will eat up all of your money. File a complaint against the dental board, at least he might get sanctioned. Or, who knows, maybe they have the power to make him refund you your money.

In my case the periodontist is not sure if the bone grafts will heal or that the implants will take.?? I have read conflicting opinions on these procedures. Some surgeons say yes and some say no to the implants.

Confused…I am so sorry. I had horrible dental work that led to permanent Trigeminal pain. Then, before I got the proper dx, I went to other horrible dentists and received additional bad care. I am in shock how many bad dentists there are out there, the last guy I went to was an oral surgeon/MD. He APOLOGIzED to me for the dental profession! It took me two years to talk to an attorney, because I was in constant pain and always at the doctor’s office. They said in my case there were so many screw ups that each dentist would point to the other. And, I waited too long. And, suing a dentist is one of the hardest cases to win as even worse than medical doctors, they cover for one another, no matter what.

I always tell people to get a second opinion as well. I’m NOT kidding around! And be extra careful about root canals. I do NOT trust any dentist any longer…my apologies to anyone in this profession or related to someone who is a dentist. No doubt there are some good ones. But, there seems to be IMHO something wrong with the profession as it stands now.…

BTW…when I say “bad” dentist…I mean greedy, cheap, uncaring, lying, dishonest, fraudulent and dangerous,…just for starters.

Wendy, Hopewell…etc…re: implants…

I agree. I do have that friend with SS that successfully had an implant or two. However, I didn’t make it through the graft process…which made me sick with fever. So…it is confusing and perhaps a little risky. I know for sure…it would need to be an excellent, highly experienced practitioner and those of us with autoimmune illness would need to proceed with caution.