>:( I'm angry with my dentist- I'm not sure if I should be or not. There are 2 in this practice and I've sen them both since my recent diagnosis of SS. They both seem very flip it when I ask questions. So far the only advise I've been given is to brush my teeth for 2 min, chew sugar free gum and try the mouth washes that are for sale for dry mouths in the drug stores. I don't know if this is all I should do or are they not up on the latest for SS mouths. I really don't want to start over w/ another dentist but if I need to I will..... Any advice as to routine mouth care? My symptoms are dry mouth all the time, the corners of my lips are cracked.... Thanks for any advice.
My rheum is a lot more helpful than my dentist. I pretty much just expect my dentist to pick up the pieces if anything goes wrong because of SJS. I'm sure that some people here have great dentists who know a ton about our disease, but I suspect that most people have experiences more like yours.
How's your rheumatologist? Has he/she been any help with your dry mouth? Are you on Evoxac or Salagen (sp?)? Are you taking Plaquenil (or the generic equiv.)? These are the only things other than what your dentists mentioned that the world really has to offer as far as I know. SJS is, unfortunately, a "treat the symptoms" disease, and most of us are uncomfortable to some degree most of the time. Getting lots of rest, taking fish oil supplements, getting whatever exercise you can handle, keeping water and gum on hand, using eye drops, and avoiding stress are also helpful, but none of those things can fix everything.
If you do stay with your dentists, you will want to tell them what a difficult disease this is. Most people think of it as simply annoying (that's what it seems most doctors are taught if they know anything about SJS). Once doctors/dentists work with a few real people who have the disease, they come to see the real impact of SJS on our daily lives. My rheum is super compassionate, but I've had to gently educate my other doctors.
You might want to look into the Biotene dental products. I have found they help a lot with dry mouth and cracked lips.
Also sucking on sugar lemon drops helps moisten your mouth.
Pooh
Someone already asked, but are you on Evoxac or Salagen? I take Evoxac and it has been a life saver for me. I had painful mouth sores and could not swallow my food without one of these meds. Also, I had the cracking in the corners of my mouth and my dentist called it chelitis (sp) and gave me Nystatin. I would rub the Nystatin (a med for yeast) on the corners of my mouth and swish and spit. You can swallow but I didn't. This cleared the yeast and I have not had a problem since.
I have a very good dental hygienist. She applies a flouride varnish to my teeth before cleaning because they are so sensitive and that helped greatly. I use Pronamel tooth paste for sensitive teeth. I like this better than biotene. I have the biotene mouthwashes and I use the biotene gel at bedtime. I chew sugar free gum with xylitol and I suck on sugar free Ricola Mountain Herb drops. I buy those at Walmart.
I would look around until I found a dentist that is sympathetic to your issues.
Anna
Like Anna, I also get the flouride varnish treatment as well. Its so worth the extra money (insurance won't cover for adult flouride treatment), you can't put a price on the only teeth you have left.
I hear you on the dentists though, I have yet to find one that knows much about SJS. Shouldn't there be a course about Sjogren's and dry mouth disorders in dental school??? Oh well, I just try and use a bit of common sense as thats all I really can do. Drinking water to wash away all the ickys in my mouth seems to be the best thing in between brushings. I even swish and spit a few times during the day.
Forgot to mention that I use Vitamin E stick on my lips. You can buy at Walmart in the vitamin section right next to vitamin E. Works so much better than chapstick (in my opinion). It is cheap, costing only .99 cents a tube. I have one in every area of the house.
Anna
thank you everyone for your suggestions- it has been much help.....
I have found there isn't anything special a dentist can do for us. We just have to make sure we brush our teeth more often, use special products like Biotene if needed, and go to the dentist more often. I have been to several dentists and all of them are aware of Sjogren's, but all have said the same thing. I think having 4 times per year cleanings has helped me the most.
I have gotten the most help for my mouth from my rheumy. I have noticed a significant difference in the amount of saliva I have since starting plaquenil. I see her every 3 weeks, and she gets excited every time she looks in my mouth because there's actually a little moisture in there now. My lips were always dry and cracking, but they have gotten much better over the last few months. I find that Lypsyl lip balm works best for me. It's nice and smooth, and not sticky (I get it at Walgreens).
My dentist recommended using the Biotene products, which I do use and I find they work better for the dryness than regular toothpaste and mouthwash. My dentist also has me using a prescription fluoride toothpaste at bedtime to help prevent further bone/tooth loss (Colgate Prevident 5000 for Dry Mouth). I have noticed my teeth aren't as sensitive to sugar and hot/cold as they were before I started using this Rx toothpaste.
mine started me on an extra flouride rinse, listerine brand, it's actually for kids ;D and said be extra good w/ flossing and rinsing because
"A dry mouth is a bacterial playground" :D
he also gave me some dry mouth rinse I can use before bed, but frankly, it's like swishing w. a teflon rinse, yuck
Hi Everyone!.
It is interesting to see that all of us have similar problems whereever we are on the globe!
I have been lucky in finding a dentist who did not start out knowing too much about Sjogren's... but who has the innate curiosity of a good practitioner and the willingness to think and do her homework to be of support to her patients. Together we have learnt much more about managing my dental issues.
We first started with Floride flushes ( I suppose it is the same as the varnishes mentioned by some others?). I have been advised to follow extra dental hygiene practices like brushing twice with a fluride toothpase, rinsing the mouth everytime I snack, especially anything sweet. I have been asked to use Fluoride mouthwash regularly. I have made it a habit to visit her everytime I seem to start a problem instead of waiting till the caries become deep or infected. In addition she once precribed a special dental mousse by GE which helped in remineralizing my teeth in the areas where the decay process had begun... white lesions not yet converted to caries. Now I probably need it again...only this time there are brown lesions... we'll have to see if the mousse still works. BTW I have had repeated fillings for several of my teeth... after all we have to preserve our only set of pearlies!
Biotene products are not readily available in India still. I have managed to get some Biotene toothpaste (which I didn't particularly find adding much value) and a moisturising mouthwash (which incidentally does not contain fluoride and therefore cannot further protect my teeth. However I find the Oral Balance Gel is quite useful to keep the mouth moist for some time especially during dental treatments or when I am at meetings/events where sipping water all the time may not be very convenient.
My dentist has observed that my decays are more widespread on all the walls of the teeth rather than going deep... Anyone with similar traits?
Happy Brushing and Keep Smiling!
Kirtida
My Dentist is good but a bit inexperienced where SjS is concerned alot of my trouble started a bit before my symptoms of SjS occurred, incidentally after I started bleaching my teeth, I don't know if this was connected or what ???
I am just waiting now to get some biotene products to see if they help with the dry mouth and tooth problems and decay :)
If I remember correctly my Dentist said the type of cavity people with SjS get are called 'smooth caries' which I think is what your referring to Kirtida?
Take Care
Paula
Dumb question - Is Biotene a prescription product or can you get it over the counter at a pharmacy?????
Thanks.
jpd
Hey 54,
Not a dumb question. Biotene products are over counter.
kimbo
Hi jpd,
I find the best bargain for Biotene at Walmart. I've noticed some stores don't regularly stock the full line of products and you may have to ask the pharmacy to special-order them for you. I've especially seen this with the chewing gum. Most stores I've been to stock the mouth washes and the toothpastes.
Erin
I think you can get Biotene on prescription in the UK. I bought some in a chemist once but haven't seen it since. As I bought it - I'm sure it could be ordered in though.
Take care - Scottie :)
Change dentists, I think it would be worth it. You need to be taken seriously and a good dentist will motivate you to take care of your teeth. Mine said that after the initial multi cavities are taken care of, if you take good care you will do pretty well. He has me using ACT mouthwash because it is a good fluoride rinse and he gave me a tube of fluoride gel to brush on at night that is a prescription strength fluoride. I'm lucky that my teeth are strong and do pretty well due to genetics. But I still have had 7 cavities filled and have one more to go under a crown before we are done (at least we think so). Good luck! PS my dentist gave me a sample of a new gel that Biotene is selling that seems to work pretty well to keep my mouth moist. I haven't found it in the store yet but keep looking.
Hmmm maybe you should see about switching dentists. Just because I am very surprised he/she didn't prescirbe a hi floride toothpaste. I think mine is called Exodent and it is only by prescription. You use it like a floride rinse only it is toothpaste. You don't swallow it or eat for awhile after using it. Best to use before bed.
Sometimes a dentist doesn't fit with you. I went to a dental place that drove me nuts and lied to me on several issues. I finally said I didn't have to take this any longer and went to another dentist who I really like, He is straight with me and doesn't recommend stuff that is not needed just to make a buck!
by the way DO NOT SUCK ON LEMON DROPS! I had my gp tell me to do that for a blocked partoid gland. Well I saw the dentist a month later and the acid in the lemon drops had eaten at the enamel in my teeth. That was several years ago and I still have places on my teeth that look like tarter but really the enamel is gone. It is very hard if not impossible to get the enamel back.
I agree those lemon drops are NOT good, I worked with a woman once who lost ALL her teeth she said from sucking on lemons. I do realize the small drops are not as acidly, but I think if you consume enough of them they may be.
I too just got to find the right dentist. I have lost some in the back most through cavities, but a couple from the dentist cracking them trying to pull others. He is SUPPOSED to be one of the best in the area, he teaches other dentists . well I beg to differ for one he is too small and frail a man to pull mine. I have large roots that take strength to deal with. That man and I would fight, with him on top of me in my lap sweating, then we would take breaks, both exhausted it was like what I would imagine dental treatments would be like in the 1800's! One time I told him to just stop I can't take it anymore, of course he couldn't it was only half way out! This buster had the nerve to mark my files to charge me more money in the future! I have already been to just about all of them in my area, for some reason I can not get numb even after being shout as much a 15 times, they say it the size of my roots. IT'S A NIGHTMARE!
I'm 46 with plans of being a spry sexy woman years from now, at this rate I don't know. I just may end up just OLD and NAGGED TOOTH to boot.
MAJOR CHANGE OF PLANS!
Bernice