My dentist says my teeth are in really bad shape because of my extreme dry mouth. I’m looking at thousands of dollars in dental bills. I have something going on in nearly every tooth. I was just at the dentist last year. In a years time, it seems the Sjögren’s has become worse. I’m venting and I’m upset. Does anyone else experience severe problems with their teeth/mouth because of Sjögren’s? I’m so frustrated. I take good care of my teeth, but it’s not enough. I’m so sick of this! It seems no matter what I do, I just can’t win!
I am so sorry to here about you dentist visit. Since I was a child I have had abcessed teeth and too many dental surgeries and root canals to count. I’ve always been told you aren’t taking proper care of you teeth so on and so forth. Now I like you have thousands of dollars of dental work to be done. In the last7 yrs. I have lost 9 teeth and the ones that are left all have eithet breakage or decay. It’s so frustrating to know that in order to have healthy teeth I need to loose the ones I have left. I was told by a dentist I should try going to a dental school where they are learning but it’s cheaper of corse to have work done. I’m not to crazy about that idea but may be an option.
Good luck with whatevet you decide to d
I recently went to the dentist....In my "pre-Sjogrens life" I did not take very good care of my teeth....GEtting this disease was a wakeup call for me.MY dentist told me that I need to brush EVERY SINGLE TIME I EAT SOMETHING. I went to the dollar store and bought a travel toothbrush and case as well assome flouride sample sized toothpastes...and the flossers. and I put all of that in a ziploc bag and it went into my purse. I can't say that I'm a hundred percent compliance but I"m doing a lot better than I used to. I'm so sorry about your teeth. I think it really is a crap shoot. I've had a number of cavities largely because of a 15 year history of anorexia.....that is a real teeth killer as well. All in all, I"m pretty blessed ....no major issues except one or two root canals.
Good luck with your teeth. I hope it's not too late to get them back iinto shape
Thank you for the feedback. The dentist asked if I ate a lot of sugary foods and I said no, I don’t like sweets. He acted like he didn’t believe me. But, after we discussed Sjögren’s he warned me to take extra diligent care of my teeth. I should pack a Baggie with my toothbrush and floss, too. This syndrome really sucks!!
I to am in the same boat guys. I have sunk thousands of dollars (while I had dental ins) into my teeth, I have several caps, root canals, you name I got it or it would seem. I've also tried everything from Biotin to prescriptions but nothing works. And now that I'm totally disabled due to the Lupus and numerous other autoimmune problems, I have no dental ins to help. And if that wasn't bad enough, a few months ago my tongue, mouth & throat were on FIRE! I thought I had scalded myself eating Pizza but after a couple of days of no relief I went to the Dr. & he told me that I had Burning Tongue Syndrome! I have never, ever heard of this but let me tell you it sucks!! I have been able to eat very little other than ice and I cant use toothpaste only a small bit of baking soda t brush my teeth. Well let me tell you, every good tooth I still had now has a cavity (in just three months)! I just turned 46 & have done everything in my power to keep my teeth but there is no way financially that I can put another ten or twenty grand in teeth that are going to do this again & again...I feel so defeated!!!
Bluesgirl32, I really feel for you. Is there no remedy for the burning tongue syndrome? Is sounds like torture!! I, too, have tried many things to help my dry mouth, but nothing seems to help me either. It’s a terrible state we’re in.
You may want to check with the dentist about brushing your teeth every time you eat something. With some foods, such as those that are more acidic, it is actually more damaging to brush the teeth right away, as the enamel is extra soft at that moment. For after acidic foods, I've always been told to wait 30 minutes after.
Qadosh2him said:
I recently went to the dentist....In my "pre-Sjogrens life" I did not take very good care of my teeth....GEtting this disease was a wakeup call for me.MY dentist told me that I need to brush EVERY SINGLE TIME I EAT SOMETHING. I went to the dollar store and bought a travel toothbrush and case as well assome flouride sample sized toothpastes...and the flossers. and I put all of that in a ziploc bag and it went into my purse. I can't say that I'm a hundred percent compliance but I"m doing a lot better than I used to. I'm so sorry about your teeth. I think it really is a crap shoot. I've had a number of cavities largely because of a 15 year history of anorexia.....that is a real teeth killer as well. All in all, I"m pretty blessed ....no major issues except one or two root canals.
Good luck with your teeth. I hope it's not too late to get them back iinto shape
Well the only thing they told me I could do was to stay away from any acidic foods, don't use toothpaste, no caffeine, chocolate, etc. only baking soda or mouth rinse with alcohol... and they gave a mouth rinse. The only thing that cools it down is ice. Thankfully it is finally calming down but certain foods still make it flare up. It just kills me to think that I spent so much money over the years to keep my teeth & now I'm gonna have no choice but to have them all pulled. It's just so overwhelming...and then dealing with my Lupus, Fibromyalgia, RA, Depression & numerous other problems! If not for this site & the Lupus site, sometimes I think I'd lose my mind completely! Thanks for the ear!
Kim said:
Bluesgirl32, I really feel for you. Is there no remedy for the burning tongue syndrome? Is sounds like torture!! I, too, have tried many things to help my dry mouth, but nothing seems to help me either. It's a terrible state we're in.
That’s very interesting about waiting a half hour to brush your teeth. I’m going to look it up online and I’ll mention it to my dentist on the 17th when I’m supposed to have a tooth extracted. Ugh!
Maybe if we gave up eating and took up drinking alcohol…? No, bad idea. LOL
Kim,
I've had teeth of chalk all my life and thought that was the worst of it,
i.e having lots of cavities and ultimately almost every tooth in my mouth crowned.
As the teeth broke off, I had to have them crowned out of pocket w/ no dental insurance.
Then they started rotting out underneath the crowns and almost every tooth in my mouth
has required a root canal and new crown. My sjogrens was only diagnosed 2 years ago
and nothing I could have done or have done to care for my teeth has made any difference.
And now that my gums are shrinking and leaving the ridges of the crowns exposed,
it takes a half hour each time to clean my teeth.
What I'm getting at ultimately is that I wish I could have just had them pulled at some point
and got dentures but in my case I would have had to have jaw reconstruction in order to wear dentures.
A forty year old friend of mine w/ sjogrens just had her teeth pulled and replaced w/ same day dentures for $3500
and has no regrets.
In my case I was extremely fortunate early on when I started spitting out teeth as I was on a school trip
to Costa Rica for a month which happens to be a dental destination. I was in a dental chair for the entire month
and had 2/3rds of my mouth reconstructed including root canals for pennies on the dollar compared to the US.
I even lived in a tent for a year to be able to get the remaining work done when I returned to the States.
I don't think there's any aspect of this that I haven't been involved in so it's no small thing for me to recommend
you start saving your money for dentures just in case. My teeth look great but they're a constant source of pain and worry.
Wow. That’s quite a story. Dental work is so expensive and, even though I have dental insurance, there’s a lot that’s not covered. It’s good to know about Costa Rica. Though, I have a 7-year old and don’t know how I would manage that any time soon. But a teaching university might be the way to go for me. I’m upset that hard earned savings will likely go toward saving my teeth and not my son’s education. Grrrrr…
That's my point.
Given what I know now and what I've had to do and now redo and triple do,
you might want to start thinking about how much is going to be too much.
This young friend is thrilled w/ her decision and frankly I'm jealous at this stage
to be out of pain permanently.
Here in Florida we have the dental school at U of F but the guidelines and timetables
have not matched the state of my teeth at the time--- and endodontics is a separate school.
When it was just the chalky teeth and I had the dental insurance, I'd schedule 2 crowns for
the end of the year and 2 for the beginning. That was, of course, before the root canals.
Andreajd, how are you tolerating dentures? I am at the point of absolutely having to have dentures in order to eat but because my mouth is so dry, I just don't think I will be able to tolerate standard dentures. I saw a prosthodontist and an oral surgeon about Implant supported dentures but having them do it means have to mortgage my home! I have been to the dental school at Oregon Health Sciences University and am waiting for a call to get started with implant supported dentures on the bottom and standard dentures on the top. The instructor assured me that if it didn't work, they could still do the implants on the top since I still have plenty of bone and won't lose that much in the first couple of years. It will still cost between $8,500 and $10,000.
Hi Kim, I know exactly what your going through my teeth have need to be all taken out , they have been like this for two years , there all black, gray and all are broken .I can't eat anything without them breaking. I've been to a lot of dentist, and without dental insurance and being on SSI , there's no money for 60 thousand dollars to get then fix. So I've been on a mission for two years writing foundations, non-profits , T.V. shows, hoping someone will hear me . And finally I might have a foundation in PA that sent me an e-mail that I might get chosen ,they said I would receive a letter sometime in Jan. So all I can do is pray . So with you I know it might drive you nuts but don't give you, because we can clean our teeth all day ,believe I've tried every product and I use evcoax and it really helps for saliva you don't have to drink all day, but has far as something working for the teeth ,the truth nothing does it get's worse, I just wish that more people knew of this . And someone needs to go national with T.V. get the word out , course I know there is people speaking out , I feel their not hearing us. But anyway I hope you the best ,and if you need to vent again i'll listen. I vent too.
Oh what fear and upset this all has stirred in me. I knew I was in for trouble when the last 4 yrs, visits to the dentist had left me in such pain and agony over the simplest procedure as a cleaning. My dentist didn't seem to understand tho, why I was in such pain. When I finally found out what I had, he simply said oh yes, dry mouth.It is so much more than dry mouth. It is pain, discomfort, trouble swallowing, sore tongue, burning throat, you name it,a feeling like locked jaw, where you are unable to open your mouth wide due to pain. We have it or get it. How can we find doctors, dentists, anyone in medical field, who truly knows about and understands our disease? I too, am thankful for all of you who share. As much as I don't want to know? I need to know. God bless us all, for we are not alone. Thank you, thank you, thank you all so much!
Evcoax? I’ll see if I can get it. And gmabuster, you’re right, this is so much more than dry mouth!
Evoxac has gotten way cheaper. It's available as a generic now. Originally I was told it would be $132 for a one month supply, and then all of a sudden, $7.50 a month. Much more manageable. Now if I could get my eyedrops covered more. I use Restasis, and that's doable. But then my eye doctor wants me using compounded DHEA drops, which my insurance only covers 42.50 out of the 92.50 a month. It starts to add up.
Hello stoney, I use Restasis and two other eye drops , question do you go to an eye specialist ,because I do and if you have a letter stating that you condition is medically necessary your scripts should be cover , but have to go to a specialist. Wish you luck!!
This is great information. I would have had no idea otherwise. Thanks for the helpful info!