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Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

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Dental Insurance with Sjogren’s


Dry mouth, a hallmark symptom of Sjögren’s, is a decrease in both the amount and quality of saliva, causing tooth decay.  This is why Sjögren’s patients often experience large dental bills that are not considered part of major medical insurance.

dry mouthWhile there is no easy answer to this problem, there is an appeal process to have dental bills covered by medical issuance that many SSF members have had luck with.

We face a tradition in which dentistry and major medicine have been treated separately for a long time by insurance companies and even many medical professionals and educators. This is unfortunate, because the mouth often mirrors the body – in other words, oral health is an integral part of systemic health, and major medical problems often are reflected in the mouth.

What can you do?

The best tool is education. Have your doctor explain to your insurance company that Sjögren’s is a chronic and systemic illness that involves serious oral health complications and treatment. Preventive care and care when problems first arise are critical so that more major problems don’t develop in the mouth and affect the rest of the body. For example, infection in the mouth can spread in the body, and loss of teeth due to dry mouth can impact nutrition. Sjögren’s patients are susceptible to developing non-Hodgkin’s lymphoma, and this complication most frequently is manifested first in the salivary gland.

Share the information on the Foundation’s Website and a copy of the Foundation brochures on Dry Mouth and on Sjögren’s. We need to ensure that our insurance providers and our doctors understand the close connection between the mouth and the rest of the body.

The National Institutes of Health Sjögren’s Syndrome Clinic worked with the Foundation to draft a sample letter that patients can give to their oral care physicians to send to their providers.

Click here for Sample Letter

Please feel free to give this to your doctor to submit to your insurance company.

You also can contact your U.S. Senators and Representative. Click here to find out who your Congressional members are or how to contact them. Tell your Congressional members your story and ask for their help. Don’t forget to share information about your contacts and their responses with the SSF, so we can follow up on behalf of all Sjögren’s patients.

The Sjögren’s Syndrome Foundation is working hard to increase awareness and education about Sjögren’s so that patients can obtain better insurance coverage. We encourage you and others to share your stories so the Foundation can use those stories as we strive to help improve the lives of those with Sjögren’s.

Additional Dry Mouth Resources: 


Useless , sorry to say , my insurance company just denied it and basically blew it off. My dentist who is also an implantologist wrote me a two page letter on SjS and the effects of it. Fantastically written letter they just scoffed at it. Said too bad.....cost me 20plus thousand dollars for my implants and crowns at a HUGE discount.
Posted @ Friday, September 14, 2012 2:02 PM by Thomas VanHoesen
Basically, I have no insurance at all. I work as a substitute teacher with no benefits. I pay out of pocket for the doctor visits and prescriptions, and work with Allergan to get Restasis at no cost. There are no dentists that are willing to work at a reduced fee I can afford, so I don't go. My children's needs need to be met before mine, so oral health gets put on the back burner. I did pay for a root canal years ago, but it never healed properly, and the cap kept falling out (most likely because of the Sjogren's.) So, now there is no tooth there, thankfully, it is in the back and can't be seen.
Posted @ Friday, September 14, 2012 2:13 PM by Patty K
I pay dearly for health insurance, think $1300 per month, and this does not include either dental nor vision. For people with Sjogren's this is discrimination due to a condition we did not choose to have. Trying to get health insurance with conditions like Sjogren's is still ridiculous and must be changed. Insurance companies are playing a dangerous game with our health. Coming up with that chunk of money every month is killing, yet I can't see my dentist or eye doctor. Something is wrong here. President Obama needs to hear our stories.
Posted @ Friday, September 14, 2012 6:01 PM by Jana Pendragon Bowdish
I just borrowed 13,000 dollars to get a bridge replaced, implants and six of my last natural teeth crowned. I have long given up on any help from my medical insurer. My dentists have said that I have "a Bentley" in my mouth, due to the lifetime of work required to keep my dentition. No options exist for Sjogren's sufferers. My sister has SS also and has had full dentures for many years, something NOT recommended for us, as we do not produce salive, making retention of dentures difficult, at best. Our dentition is part of our overall health, however, medical insurers do not agree.
Posted @ Saturday, September 15, 2012 5:50 AM by Linda D. Charles
I have SJogrens, RA, Fibromyaliga and no teeth and can't get any help. My Rheumatologist told me last visit that if I don't get my mouth fixed it was going to kill me. Dentist don't care. On of them almost fainted when he saw my XRay's, I guess it was the first time he had seen SJS. No help, just waiting to die, can't chew food.
Posted @ Saturday, September 15, 2012 1:57 PM by Debra
Sjogrens causes tooth decay, loss, gum loss, broken teeth and ultimately massive amounts of time and money in dental care. Unfortunately for many with Sjogrens, Sjogrens is either primary or an overlap syndrome with other autoimmune diseases. Thus, many people with Sjogrens have already depleted their financial resources due to their limited ability to work and excessive medical expenses from multiple conditions. In the last year, I have lost 5 teeth, 2 of which were broken and needed crowns and 3 others that just disintegrated at the roots over time.  
My oral surgeon suggested implants given the situation and the amount of teeth effected, e.g. a bridge wouldn't work.  
My insurance denied the claim for any work on my mouth despite the diagnosis of Sjogrens.  
Individuals with Sjogrens have substantive costs in preventive care in over the counter products. If Congress can recognize the need for over the counter products, it is a easy next step to understand the implications of the limitations of those products in preventing further disease and decay. Tooth loss and dry mouth can lead to many other serious conditions, such as but not limited to heart conditions, etc. which become more expensive for insurers.  
Some options for individuals while we wait for Congress to act, are University dental schools, sliding scale fees dentists based on ability to pay or dentists that accept payment plans, Care Credit, dental grant programs, and cosmetic grant programs.  
The bottom line is dental care is expensive and has a direct correlation to the diagnosis of Sjogrens which is recognized by Medicare as a disabling condition. The aspects of that condition should also be covered by Medicare. When Medicare covers an item, most insurers follow. Write your Congressman!
Posted @ Saturday, September 15, 2012 3:02 PM by Vannessa
i would love to have insurance for sjogren's i wish i could disblity to my joints swell up from this sjoren's i hurt all the time and pain full
Posted @ Sunday, September 16, 2012 12:58 AM by linda
What amazes me is that providers/health organizations do not push the connection between oral health and overall physical health. This is a no brainer! The fact is so many autoimmune diseases attack the digestive system. Oral health should be at the top of the list for treatment. What dental plans don't cover medical insurance companies should. 
For people with out insurance(s) seek out free clinics that may be available in your area. They may know of a dental school or a kind hearted dentist that can help at no or low cost.  
Posted @ Monday, September 17, 2012 6:25 AM by Pat
I went to Costa Rica to get implants. THe estimate I had here was almost $100,000 for the work I needed done. It took 2 trips, with hotel, airfare, food and dental work, $20,000, and we used the deductions on our income tax return.
Posted @ Wednesday, September 19, 2012 11:43 AM by Deb
I am so thankful for this site. Years of dental care, braces, implant bridges & now upper plate, $5,000.00 & can't keep it in. Now I know why. Me & denture adhesive are forever. Put on before I leave home. Don,t eat or drink until I must then to bathroom at home or to restroomroom beore I eat & then again after & hope it holds. Wish I could invent an adhesive to hold. Any suggestions? So far only thing that works, for awhile, is Fixadent Free for the most part & then dentures in a cup overnight. Good thing I'm not married. I spend far to much time worrying abut my denture coming out. Does keep me from snacking. That's not a bad thing I guess. Must think twice
Posted @ Thursday, September 20, 2012 7:12 PM by Charlene Krown
Has anyone been successful in appealing to their medical insurer for dental implants due to the effects of Sjogren's Syndrome? 
I have extensive dental needs and my coverage has a lifetime max of $2500 for implants. I want to appeal to my medical insurance company to help pay for the extensive dental work that I need done, but I need help (a template letter)from someone who has been successful. 
I have a partial now and absolutely hate it! It contributes to the dryness in my mouth, it affects the way foods taste and I get sores from it, so dentures are not going to happen.  
Input relished and much appreciated.
Posted @ Wednesday, September 26, 2012 3:12 PM by Sweater Girl
For implantates there is a veri8ably succes. Here in The Netherlands some reumalogist says do not implants by sjogrenpatiënts. There is not 100% unimaus answer on. We have got a special dental inssurances and that is varibly of the health insurrances company. We pays atrond €220 par month for healt and dentist. And than we have got a required annually onw risk of €220 this year and next €350. But some medicinens must we pay who are not falls on the health insurrances
Posted @ Wednesday, September 26, 2012 5:06 PM by Richard Troost
I live in cape town SA and am lucky enough to have a dentist who knows the syndrome. I too have lost a few teeth due to the syndrome, dentures dont fit properly and it is hard to chew, have altered my diet cutting out red meat as it causes me to choke. I use a supplement called moducare and was diagnosed 3 year ago and it certainly has helped up to now - I do dental checks every 3 months and was told that implant wont help due to bone loss. I also have a doctor who fully understands the problem.
Posted @ Saturday, September 29, 2012 1:34 AM by helen gilardi
I wrote to my medical insurance (Regence Blueshield) and sent letters from my Doctors. Regence eventially sent me a letter stating they have reviewed my case and agree that my dental issues are directly related to my Sjogrens syndrome and said my treatment will be covered. The problem is finding an oral surgeon and dentist that will trust the letter. They all want payment in full up front before doing any work. One estimate was $58,000 just for my bottom implants. I have been seeking an oral surgeon who will trust the letter and do the work I need without requiring payment in full first.
Posted @ Friday, November 09, 2012 11:10 PM by Dyan
Wow $58000 is a lot for Dutch standards. Maybe you can better come to THe Netherlands for a treatment and than billing it to the insurance. It's cheaper for the insurance company. I think our dental technisans wish this paid for this work.
Posted @ Saturday, November 10, 2012 7:42 PM by Richard Troost
OH, what a topic. I have had it all, this year alone have had 3 root canals, 2 crowns and a MESS of old fillings fall out, 3 teeth chipped to pieces. You THINK YOU'RE GOING CRAZY when this happens. I owe $$$$ to Care Credit Dental Finance but thank God for them because you are given a 1 year interest free loan...IF your dentist has a contract with them. I will be out of a job and insurance soon and what then? Will try to get in to our local free clinic and PRAY there are no major dental flare ups in the meantime. Take good care, everyone.
Posted @ Thursday, November 22, 2012 7:26 PM by Mary Beth Lowery
I reiterate the advice given on September 29th by my dentist and medical practitioners please make this known on your website before other sufferers globally get themselves into further debt. Its quite simple they are being ripped off!!!!
Posted @ Friday, November 23, 2012 10:13 AM by helen gilardi
I’m glad I found this website finding out about all of you has just made me feel 10 times stronger. I to have been diagnoised with sjogren’s disease but before my rheumatologist discover this I had been misdiagnoised. For 3years i thought i had lupus then RA it took years before someone in the MEDICAL FIELD find out what was wrong with me.And I kept up regular visits with my dentist and things started happening with my teeth which really bothered me because our family always took care of their teeth. So when I asked the dentists what was wrong he blamed it on me for not taking care of my teeth. So my questions is if these dentists think their are experts on Sjogrens none of us would be in this position.Trust me if they do not fix this solution I will get the best lawyer and it will cost you a hell of a lot more then if you just would have been a man about and paid for our teeth though our medical insurance . Like i said if a dentist diagnoised it and it did only effect my teeth I won’t be doing this but when they lie to you and want to be something in your mouth that shouldn’t be in there and has the possiblity to cause more damage I don’t want them near me. I am going to see a specialist that knows what he’s doing and my medical insurance is paying for ever last dime.Also the people that wrote their horror stories about what happened to them are getting their teeth fixed to. There’s power in numbers and the press love to hear stories like this. Just remember i never say anything i don’t mean so if you thinking i’m just shooting off my mouth by all means test me...I’ll be looking forward to it.. Have a nice day!!!!
Posted @ Wednesday, January 09, 2013 9:21 PM by wanda baker
You go girl! I'm right behind you. What we have collectively encountered with the "medical industry" is sincerely horrific. Welcome to the human race. Chin up everyone, hang in there and don't turn the other cheek. Push back.  
A resource that may help people here in the states are local chapters of Ombudsman.  
Oh and I can not stress this issue enough. Obtain your medical records on an on going is a lot easier to weed out the "professionals" that are not on the same page as you are...make excessive charting errors and put there own personal twist on issues, and hippa....ha, ha, ha...that is the biggest joke of all. And when this (medical records)goes will implode very quickly and so many will be affected.  
Good Luck to everyone on this journey. 
Posted @ Thursday, January 17, 2013 6:03 AM by pat
I have a problem with sleeping and have been taking clonazapam which is an antianxiety medication for years. One of the side affects of this medication is to much saliva. 
I have sjogrens and do not have a problem with dry mouth. Would suggest you ask your Dr about it. It may not be a side affect for you but it's defintally worth a try.
Posted @ Monday, January 28, 2013 9:49 AM by Mary
I have been suffering for more than 5 years with most of the sjogrens symtoms. Severe arthritis,sleep problems,chronic fevers,fibromyalgia,and in the last six to eight months the dry mouth,dry eye has really gotton bad. I have lost 5 teeth in the last 4 months. Several more chipping,fillings being replaced. I refuse root canals. What's the use they are going to come out. Why waste the money i need to pay for other expenses. My arthritis is so bad I had several toes need to be straightened and screws put in. I found this site while trying to find some kind of financial assistance for people like us. Stuck out in limbo waiting for the insurance companies to recognize our situation. I was even thinking of starting a fund raising program in which the funds would be put in place to help those of us in need. If we could get groups set up in our areas I think this could be done. I dont believe we could cover those $20,000.00 implant bills but help with over the counter medications. Or if you are like me you have to travel hours to your doctor and may have hotel expenses, gas ,meals and co-pays if you have insurance. Just a thought. Let me know what you think.
Posted @ Monday, February 04, 2013 3:31 AM by Doug
I just spent $1300.00 on ONE tooth. I noticed roughness at the gum line, and sure enough, it was a cavity. Dentist started working on it and had to do a gingivectomy, as the cavity was down deep below gum. Crown added. Dental insurance would NOT pay for gingivectomy because it was not pre approved. Ha ha! The dentist didn't expect to do one! Holy cow, give me a break!
Posted @ Tuesday, March 05, 2013 3:02 PM by Mary Beth
I am 33 years old and was diagnosed with Sjogren's Syndrome about 6 years ago and was diagnosed with RA when I was about 2 years old. My employer just recently acquired an employee dental plan which I was excited to take advantage of. It's been a few years since I visited the dentist because my last few visits were expensive as my teeth have been declining since the diagnosis of the Sjogrens. I was just informed by my dentist that the Sjogrens is destroying my teeth. I need $10,000 of dental work done which caused me to break down in the dental chair. I am married with two young boys and just had a hip replacement last year and have no idea how I am going to pay for all of this dental work. I was disheartened to learn my medical insurance won't cover these dental bills and will plan on fighting it.
Posted @ Wednesday, March 06, 2013 10:02 PM by Allison
I am very fortunate. I live in Canada and work as a nurse with benefits and my plan has covered thousands of dollars in dental work. I go every 3 months for cleaning and check ups and it has all been covered. OTC drugs such as saliva replacement therapy however is not covered ( 80.00 )/month. I had a parotidectomy 2 yrs. ago and need the Sialar every meal and through out the day.
Posted @ Thursday, March 07, 2013 10:08 AM by David Brint
In The Netherlands as you have got a subsitive insurances than your dental cost are pay for 75% or 100%. Only saliva substitute will in the most cases not get paid. And medicines likes Pilocarpine(Salagen) in some cases even not. I get paid it back.
Posted @ Friday, March 22, 2013 8:19 PM by Richard Troost
I believe Dental Care should be as important as Medical Care and Encompass both aspects since it is proven what a impact dental health can have on the body as a whole. Why won't insurance encompass a problem that has such a negative effect on the persons pain level-health and ability to function. Petition Congress! We need to get the AMERICAN DENTAL ASSOCIATION involved-MEDICARE -and those that over see them
Posted @ Saturday, May 11, 2013 11:29 AM by Rhonda
My heart goes out to all of you. I too, pd. over $18,000 cash out of my pocket in 2012. Minimum of $2,000 ea. tooth. I had 5 teeth pulled in 2011 but just leaving them with spaces. I do not have any money for anything else. I cannot eat very well with the crowns so hard to eat out with friends. Trick for moistening your mouth, peel an apple and eat it. Helps a lot. I also and have mentioned it before on here-Zico, pure coconut water and is like an instant IV. Helps for a bit to wet your tongue and lips.
Posted @ Thursday, May 30, 2013 12:15 PM by Ronni
I have a very mild case of Sjogrens but I do have dry mouth I drink water althrough the day. I had a bridge put in about a year ago and it fell out today. Should I get an inplant or get by bridge put or glue back in or will the bridge fall out again because of my dry mouth? I do not have dental insurance. I already paid $10,000 for this mouth. This is my second bridge. The first bridge cracked and the Dentist was a fool. In order to fix the crack he wanted $20,000 for additional work. So I went to another Dentist and he told me that I did not need $20,000 with The Dental work I needed the bridge fixed. So I switched Dentist. Now a year later my bridge fell out. I have no clue what to do. Thank you for your time.
Posted @ Saturday, June 22, 2013 6:03 PM by Debbie
Your dentists makes good money. And than we make in Dutch that our dentist makes big money, but that is a little bit what your dentist ask for a treatment. I have choice the wrong profession.
Posted @ Sunday, July 07, 2013 8:00 AM by R. Troost
Hello,can u say depress all the time...39 yrs old i've been having this for over 12yrs jus a couple yrs ago they found out wat i had...We need dental asap thts all im gonna say to sad right now this condition destroys us!!Stay bless!!
Posted @ Monday, July 29, 2013 6:25 PM by Grovecia Brown
Dental health is very important for a sjögren patiënt. But the problem is that the cost expensive until you have got a good health Insurance for the dentist.  
And I have learn that the prices for dental health in The States are much higher than in my county.  
A total artifical teeth cost around €1100 in $1465 
A total with implants in €10000 and in $13317. But I have heard that cost in The States around $58000 what is in €43553,35  
A difference of $44683 and in €33553,35. We talk not about a few $.  
I hope for you that the prices decrease for health and the dentist. Because you need the assistance.
Posted @ Tuesday, August 06, 2013 10:16 AM by Richard Troost
I am finally dealing with teeth problems due to Sjogren's. I have put it off for a few years for both financial reasons and my overall fear of the dentist! I have been lucky enough to find a dentist here in the US that is familiar with Sjogrens and we have come up with a good treatment plan. My bottom teeth are completely rotted out - so we are going to do an implantable denture. I won't have to worry about denture pastes and creams since I will have a hook/snap feature that will anchor the denture into place. My top teeth are just going to get fillings/crowns as I can afford them.  
I, of course, know what it's like to deal with the embarrassment of the decay. I have been asked my dentists before if i have done meth!!!! Yeah, meth! Excuse me, ummm no. I have an actual medical condition that has lead to tremendous tooth decay. I did invest about $2000 three years ago for a Snap In Smile. It is a resin set of teeth that snap in over yours. This has helped with self confidence and has made me able to "face" the world and helps me feel more normal. They can last up to 5 years. Just a few ideas/options.  
I also know, when I was much younger I was on something called Salavant to help with saliva production and I am going to get back on that again!  
Good luck everyone! I am going to get my $10,000 worth of dental work done in the next few months and I going to submit the claims and receipts to my Blue Cross Blue Shield PPO Union Plan after I pay in full and here's hoping for the best!
Posted @ Wednesday, August 21, 2013 4:09 AM by Heather
I am also going with the dentures with the mini implants for the bottom plate. My top teeth are still in great shape but my dentist said if Ionly have a bottom denture, it will eventually destroy my top jaw. I am opting to have all of my teeth pulled at once, so I am hoping this will be the right decision. I too am going to send bills to Regence Blueshield for reimbursement after I pay for the procedure, which is about $12,000 .
Posted @ Wednesday, August 21, 2013 10:58 PM by Dyan
Hello All, 
I just ran across this site and wanted to pass along some very  
helpful information. I am a dental pharma rep for a new prescription drug that is used to treat Sjogrens. It is a supersaterated calcium phosphate rinse whose components are that of human saliva. I was recently at a Sjogrens support group and 7 people were on this new drug and has helped them tremendously. I am a rep out of Chicago, so if you live here, send me an email. I will connect with your dentist so he/she can prescribe this to you. If you don't live in Chicago, you can go to our website for more information. Our corporate office can put you in touch with your local representative so that your local dentist can prescribe this to you. I hope this helps!! Any questions, please let me know. I am happy to help. I have been in dental sales for a long time...I have seen alot of things, but this is a real break through. All my best.
Posted @ Wednesday, September 11, 2013 11:52 AM by Elizabeth Elliott
Always with a new medicine you need to realize that every sjögren patiënt react different and even the sensibility reactions. It is know that sjögren patiënts are more allergics than another. I hope it helps.
Posted @ Saturday, September 21, 2013 2:46 PM by Richard Troost
Richard that point is key. We are sensitive souls and allergies, especially in the over processed world in which we live. Is it any wonder the incidences of auto immune illness is skyrocketing world wide.
Posted @ Saturday, September 21, 2013 4:20 PM by Pat G.
My story is similar to all of your others. I'm just had my 11th implant placed with at least 2 more to go and crowns on the other teeth. It's been a long haul, emotionally,physically, and especially financially. I'm making another appeal and am hoping for the best now that I'm retired and on a more fixed income. I am very thankful for a kind & supportive dentist. Blue Cross denied all previous claims saying any dental work was not covered. How about that dental work that results from a medical diagnosis?!!
Posted @ Tuesday, October 08, 2013 11:21 PM by L. Hafer
I also have numerous autoimmune issues.My teeth have reached the point where all the caps, crown, bridges and facades built around the few real teeth in my mouth aren't helping. With the Sjogrens, my mouth is so dry. I was told by numerous dentists that I could never wear dentures because of the dryness. Has anyone tried the Hybridge system for their dental problems? It's a system where 6 implants are placed on the top and 5 implants on the bottom. Then a full "denture" is made for upper and lower. The "denture" is attached to the implant. It remains in the mouth and is only removed by the dentist if work is needed. There is no taking it in and out like regular dentures--so the lack of dryness hopefully won't affect it's ability to function properly. I don't see any alternative. It's quite expensive $40,000. I would really appreciate it if anyone that has had this procedure done would give me their feedback. I hoping this technology and the skill of a great dentist will give me a real smile and teeth that I'm not so ashamed of. Between Sjogrens, Raynauds and Lupus--I really need something to help me feel normal. Hopefully we can help each other. We seemed to be joined by a common bond. We don't understand it all and those around us can't imagine our everyday. Hopefully, we can all help each other. Thanks
Posted @ Wednesday, October 23, 2013 10:15 PM by marilyn
I would like to say to all, I am sorry for all your dental problems. I am 34 yrs old, and recently diagnosed with Sjogrens. I have however been eating a Paleo diet for about 2 years. I would highly recommend all of you looking into this. I have noticed a dramatic improvement in my oral health since switching. I still have a low saliva , but my teeth feel clean all day after brushing them with toothpaste I make myself.
Posted @ Tuesday, October 29, 2013 1:13 PM by Nicole
I, too, have Sjogren's along with Lupus and Reynaud's and who knows what other autoimmune stuff is involved. After fighting with a ton of major dental work for about 20 years, it became so bad I couldn't even eat without pieces of my teeth breaking off, and had awful toothaches constantly. Finally, after spending a fortune in dental work, I decided to go with getting all of my teeth pulled and getting full dentures with an implanted lower denture. I began all of this in June 2013, and it's now Jan 2014 and I'm scheduled to get 2 lower implants placed the end of this month. It's going to take a couple of months before I can actually use the implants, this has been a LONG, COSTLY, and very painful procedure, to say the least. My dental bill thus far is over $11,000 and that's not including the implants. I had 2 dental insurances in the beginning that paid $2000 of this...leaving me with $9000 to pay at this point. I have a rheumatologist and dental surgeon that have both written extensive letters for me to appeal a refusal to pay from my medical we'll see what happens. I'm insured through Tricare Prime since my husband is retired military. I'm also retired, so truly am praying that we don't have to use this huge chunk of our retirement savings to pay for a condition that was caused by a medical condition.  
Posted @ Tuesday, December 31, 2013 12:07 PM by Linda
I'm 28 and just being diagnosed with SJS, however my dental issues started when I was 14 and just now I found the connection with SJS. 3 months ago I had a major dental surgery of 18 teeth extractions, my mouth was full of infection, all the root canal treatments I had during years weren't worth it, the infection was even affecting my jaw bone. All the dentists I visited during years never thought that my poor dental health could be related to a bigger situation so they didn't treat the problem in the right way. The surgery and 5 implants cost me 25,000 dollars and I'm still waiting for a second surgery in a month to have 8 more implants which will be around 20,000 more, I also had to crown my last 7 natural molars which meant 8,000 more. I have to ask borrow money to be able to pay for the bills, my insurance didn't covered the implants because they are "aesthetic" and the only thing they will cover is for dentures. My dentists here in houston had been doing a great job trying to finally free me of all that infection that has been debilitating my overall health. They were in shock that a 28 years old young woman has a mouth of a 90 years old. The worst part is that I've always been obsessed with the care is my mouth, brushing my teeth regularly, using floss and mouth washes and every time the dentists back in South America were always blaming my condition to a lack of care which was embarrassing and frustrating to me. My whole life savings are in my mouth now and the worst part is that it isn't over yet :(
Posted @ Thursday, January 09, 2014 9:03 PM by Maria Arteaga
The knowledge of sjögren is by dentist, psychian and another specialist worldwide a big prblem issue. We in The Netherlands try to learn young doctors about the problems sjögren and the symptones. I hope that one time sjögren is a disease where every doctor reconise the symptoms.
Posted @ Monday, January 13, 2014 7:51 AM by R. TRoost
I too have Sjogren's. Dry eyes, dry mouth for years and then dry esophagus. Now stomach issues I am sure is related.  
Would like to share: Trident Watermelon twist gum with xylitol makes my dry mouth water and it tastes good. No other flavor and no other brand of same flavor. If this helps one person, it is worth my time. 
Dental issues have been a very long, expensive problem and am now looking at what to do next.
Posted @ Thursday, January 16, 2014 3:30 PM by mo
Sjogrens x 20 yrs, misdiagnosis as Lyme disease. Dx 2011, now RA, crossing back & forth auto spectrum. Hx of 2 bridges, 3 increased sizes of upper partial. Anchor teeth falling lower in mouth & pain. Lowers one rotting, elevated neck nodes with lower skull discomfort 90 percent. no insurgence either. Pulling is probably only option! But can' t afford dentures. I asked VA about covering dental work d/t disease process but will only cover if hx injured Vet.
Posted @ Tuesday, February 18, 2014 12:27 PM by Jessica McMaster
Hi, I have primary SS and like no saliva at all. I now have 4 teeth missing and every other one capped, some more than once. The writing is on the wall that I will lose more and more. So I am seriously considering having the 4 implant/perm. dentures done. My concern is if the dry mouth will cause a problem. Does anyone have experience with this procedure. I have read that some people can't even have implants. Thanks 
Posted @ Monday, February 24, 2014 12:13 PM by Elsie C.
I've had Sjogrens for about 9 years now and wanted to share what has helped me tremendously. I've actually posted this before, but I want to repost because of the impact it has had on me. Clonazepam is antidepressant that I was prescribed for sleep, one of the side affects is to much saliva. It may not be a side affect for everyone but it is for me and I have saliva with no dental problems. I would recommend you ask your doctors about it. It's been a huge blessing for me.
Posted @ Tuesday, February 25, 2014 1:11 AM by Mary
It's 7:26 am and as I read these horror stories about Sjogren's recepients and the many dental problems we are having, I don't understand why the Sjogren's foundation isn't rallying every minute every hour every second to get the attention of congress. This is a big problem!!! If Sjogren's patients health is failing because of this disease, it should be a no brainer that our lack of being able to afford dental care is greatly connected to the health/dental damages this disease causes. Everyone knows that without proper dental care Sjogren's sufferers health decreases greatly. I have been suffering with a gum infections for months and I like others can't afford the dental cost. When will there be a rally on Washington's door steps about this crippling disease and the many ongoing health problems it causes. Does someone have to die first?
Posted @ Thursday, March 27, 2014 6:46 AM by Ms Ann
After reading all of these scary painful awful posts I realize I am down to 4 caps and 4 teeth that need caps left on my bottom and top teeth are (shhhh) okay for now. Honest thoughts on caps, implants, dentures, and trying to save the teeth I have left?
Posted @ Sunday, March 30, 2014 12:27 PM by Julia
I've read everyone's sad expensive painful terrifying story and I realize, no one replies with any answers. :( how do we know if stuff works for others?
Posted @ Sunday, April 13, 2014 7:36 PM by Julia
I agree with Julia, I'm looking for success stories, I have Sjogrens Raynauds Systemic Sclerosis Depleted immune system and allergic to all meds that normally help. I have 11 rotting teeth left, the rest have broken below the gum and my Doctors have tryed endlessly to rally and get medical approvals. I dont even make enough money to pay for extractions. Live in Southeast MA need oral surgeon and options. Desperate!!!
Posted @ Saturday, April 26, 2014 4:49 PM by Debi
I've just finished reading all the horror stories on here and can't believe this is happening to me! Diagnosed a little over a year ago (3 Rheumatologists later)with Sjogrens after having had a dry mouth for the last 19 years. Imagine being a former dental assistant who has always taken care of their teeth. I used to be that patient that the dentist saw twice a year for cleanings and over the last couple of years it seems like every tooth in my head is rotting out! I have had crowns, infections with the crowns, root canals, fillings falling out, etc... I had the material under the crown disintegrate and get infected. One cleaning, one root canal & crown this year and I have no more insurance for remainder of the year- I have one tooth that needs a filling, a filling that just fell out this week and due for the second cleaning in August!!! Called the insurance company and the couldn't have cared less...
Posted @ Tuesday, May 20, 2014 11:24 PM by Susan
To everyone especially Debi and Julia. I just completed a 7 month journey with my teeth. I have Sjogren's and my mouth is extremely dry in addition to other stuff. My regular dentist was doing all he could to help with my disgusting, rotting teeth. I couldn't bear any more procedures--root canals, caps, crowns, bridges, you name it. My mouth constantly hurt and my teeth were yellow, grey, black. I was embarrassed to smile, my breath was horrendous. I was told I could never wear dentures because of the dryness. One dentist even told me that he had an uncle with no teeth who could eat steak--can you imagine? Well, I saw an ad for a seminar about the Hybridge method with the office 5 mins from my house. There was nothing to lose, so I went with my husband--I needed his support, his ears to listen. Quite simply put, this dentist knew about Sjogren's and YES, he could help me have a beautiful smile and teeth that didn't hurt. It was expensive and a 7 month journey with this dentist and his wonderful staff beside me all the way. The Sjogren's complicated this procedure and he accommodated each obstacle. If anyone wants to know more about the whole process, I would be more than glad to help you. I use to cry everyday because my real teeth hurt so much and I was ashamed of the way they looked. Now, everyday I cry too--but for joy. When I look into the mirror I see a happy, mouth healthy grandma. Maybe this could help many of you too. It's worth a look into this Hybridge method. I have "permanent" teeth, no dentures. Initially the method seemed like something in a sci-fi movie because it was too good to be true--I'm extremely happy. This Sjogren's is horrible as most of you know, each day seems to bring another problem. Hybridge solved one of my biggest. Best of luck to everyone, hopefully we can continue to help each other.
Posted @ Saturday, June 28, 2014 11:51 AM by Marilyn S
Thank you for that Marilyn I hve looked into it but no insurance helps cover the costs that I have found and I can not afford it
Posted @ Saturday, June 28, 2014 12:39 PM by Julia George
I know about the dental insurance, so far they've covered maybe 5%. The money for the Hybridge was being saved for our grandchildren. I felt horrible spending it on my teeth. Our adult children all said they would much rather have a healthy, happy grandma than money in the bank. It's sad that we have to make such difficult choices or even more sad because of lack of funds there is no choice. Maybe one day Sjogrens will be covered by insurance for the truly chronic disease that it is. I hope this will be in our lifetime.  
Don't give up hope.
Posted @ Saturday, June 28, 2014 1:13 PM by Marilyn S
That is very sad but very loving. If I would have known I was going to have this issue I would have saved and spent my millions in other ways but instead I chose to take my kids that are now grown but still need help on three week trips every year and blah blah blah lol. Never giving up hope still working for 250 every two weeks because the cost of my health care is 237 every two weeks lol! Finishing up my degree in 4 weeks and working a part time from home. I've learned how to chew with my gums lol but chips hurt and meat can be very tough then there's the issue of no saliva to help break anything down haha! Or swallow chunks lol anyway maybe someday I won't be single and struggling :) gla to hear it worked out for one of us dealing with this terrible issue :)
Posted @ Saturday, June 28, 2014 2:27 PM by Julia George
I was diagnosed with Sjogrens about 6 or 7 yrs ago, have had gum and dental problems for about 20 yrs...never connected the two when I was told I had Sjogrens, started needing tooth removal about five yrs ago...had caps, bridges and partials, but they didn't last on the upper part of my since I have had dentures and nothing but difficulty, discomfort, irritated gums no matter how many adjustments, different adhesives, strips etc. My dentist is now making my third denture in 3 yrs at no cost to me......BUT AFTER READING SEVERAL SITES ON THIS TOPIC (Sjogrens and dry mouth), I AM WORRIED THAT I MAY NOT BE ABLE TO WEAR DENTURES AT ALL, BUT ONLY IMPLANTS..........CAN ANYONE CONFIRM THAT CONCERN OR HAVE THE SAME EXPERIENCE (I thought I was going crazy ...what was wrong with me...from some others I know wearing one has had such difficulty.......PLEASE SOMEONE RESPOND...THANK YOU!
Posted @ Friday, July 04, 2014 9:46 PM by Linda
Talk to your dr about medications that sometimes help w/dry mouth (salagen-pilocarpine) and OTC Biotene products help some. Though, quite $$ via a RX prescription one can write off some OTC products & medications as tax deductions. These and staying hydrated~measuring intake seems to help take quite an "edge off" the symptoms you've described. I also would suggest you search online for holistic -natural/and alternative ( things) that support; " healthy gums & teeth"! I'm a former nurse & trust me I hate dealing with this. Mine is connected to inflammation caused by 3 types of arthritis & a off type of MCTD (form of lupus). So~ addressing " inflammation" & decreasing ~this Greatly helps my over all symptoms. I cannot go off a basic Paleo type~ eatting regime ; I was diagnosed at 23 (and told I'd be in a wheelchair prior to my 30's) with connective tissue problems + bone problems. I worked 18 years though much on call due to health ; and at 52 I am Not in a wheel chair. I do deal with repairing caps~broken ; previously repaired teeth & have 5 ( of my own~teeth removed & pinned back in as caps). I had a military delta dental provider (do this~after realizing my health problems) though I was told they would only last 10 yrs (crack or need replaced) my~own faux parts; teeth. ( work best & feel the least problematic). I'd advise a dentist that recognizes the medical implications & keep keeping on! Addressing the (whole body) helps soothe my mouth & whenever I neglect to do so I feel horrible because of the mouth being so sensitive & problematic as well. Trial & error caused me to learn. & having healthcare from all over the USA as well as Gernany Canada France shed light on the vitality of a whole body approach.
Posted @ Friday, July 04, 2014 10:15 PM by rklewis2
Hi Linda, Raynaud's can affect people in different ways--mine sounds like yours especially with the drynes in the mouth. I knew I could never wear dentures even before two dentists confirmed that. My mother & grandmother went thru torture and multiple pairs of dentures during their lives--they never fit right. The only option I found that would hopefully work for me was the Hybridge method. I wrote about this in Oct & June. Yes, it is very expensive--insurance covered just a bit--but, this is for the rest of my life. My mouth is pain free, the smile is beautiful. I can't eat everything as I don't want to risk cracking something over eating popcorn. My heart goes out to you--it's not fair that this isn't considered a medical problem. I hope you find a solution to your problem. Look into the Hybridge method--I guess it also depends on the dentist too--mine was a God send. Keep us updated.
Posted @ Saturday, July 05, 2014 9:11 AM by Marilyn S
I have had sjogrens for about 10 years and over those years many times I had over $5000 a yesr out pf pocket. In May (3 months ago) I had to have 23 rotten teeth, crowns and l removed for full dentures. 3 opinions and the experts at Baylor School of Dentistry all said implant supported dentures were the right solution even thougn my Sjogrens was severe. A MĎ/DDS did the surgery. The teeth fractured and the jaw splintered. I had 8 unexpected bone grafts and ended up looking like hamburger with bone splinters hanging all over my gums. You pull them out with pliars when they come out enough. The dentures ate hideous. The top teeth are way to big-- they resemble a horse. The bite doesn't meet. The bottoms are big. They keep saying they will fit when I heal. If do my face profile will change and I will look really bad. Several people have already pointed that out.  
So far I live on oxycontin. The pain is awful 3 months into this. DO NOt do this unless you have to. Total bill Will be around $58K for the whole thing. 
Looking for 2nd opinions before I go further, Mid-Cities Texas. 
Posted @ Tuesday, July 29, 2014 2:24 PM by Karen Coker
sjogrens letter to medical insurance
Posted @ Wednesday, August 13, 2014 8:43 PM by nancy
Linda with Tricare prime what happened? I have been looking for your results with Tricare.  
Posted @ Thursday, September 04, 2014 7:09 PM by Dianne
I've been waiting to post until I could find out just what all Tricare would cover. It's taken a little over a year to get all my dental treatment done, and so far they DID cover around $6,000 on an estimated $14,000 bill that was to include pulling of all my teeth with immediate denture, then several months later, placement of 2 dental implants to stabilize my lower denture, then finally a permanent denture to fit with the implants. My dental office really dropped the ball, as they didn't submit all the charges to Tricare at the same time, plus they didn't get prior approval for coverage for certain services, so here, over a year later...they are FINALLY submitting Tricare what they say is a completed billing and I've yet to hear from them. However, I CAN tell you that Tricare considered my dental work as "adjunctive dental coverage" due to my Sjogren's and I submitted letters both from my Rheumatologist and my Dental Surgeon. The jury is still out on whether they will pay anything on the 2 implants I got, but the Dentist told them that I would never be able to hold a lower denture in place with the dryness in my mouth without implants to hold them in. I'll post results when my billing is completed and I can be more precise about Tricare coverage I received.
Posted @ Saturday, September 06, 2014 2:20 AM by Linda Alexander
Having all my teeth pulled in 3 days due to Sjogrens. I'm so scared and depressed after reading all the comments! :(
Posted @ Monday, September 08, 2014 4:36 PM by Richelle
Hi Richelle, in November I was exactly where you are. I was on vacation in Florida crying and so mixed up about getting all my teeth taken out. I thought of every worst case scenerio possible. My stomach was in knots and I had a constant headache. My husband said "what other choice do you have?" There was no answer because there was no other choice. Long story short, I had all my teeth pulled and started the Hybridge journey. Is it perfect?--no. Is it better than what I had?--yes. Sjogrens takes away much more than our saliva. I have a wonderful smile and a mouth full of unnatural stuff. I actually feel as if I have some moisture in my mouth. It's been 9 months now. Still getting use to "chewing", Missing 4 molars that I didn't know I wouldn't have, and sometimes speaking with a lisp--I would do this all over again. Before the procedure my teeth were horrible, my breath was embarrassing, my mouth hurt and bled constantly. You have to decide what you think is best for you and for the foreseeable future. I wish you well.  
Posted @ Monday, September 08, 2014 9:57 PM by Marilyn
I have Sjogren's Lupus and Reynaud's. My dental issues are getting worse weekly. For about 16 years I have used Evoxac (generic is Cevimeline)for dry mouth. It is a small capsule and works for about 3-5 hours. It is essential that I take one before bed because the dentist told me that the nighttime dry mouth does the most damage due to amount of time we are asleep and lack of liquid intake during sleep. I still need 2 more root canals, but the last tie I had one it became infected and I was in the hospital because the infection went to my heart. I am still researching options and taking clyndamycin.
Posted @ Wednesday, October 22, 2014 12:43 AM by Beth
I love all the posts. I am 71, almost 72. I was diagnosed 15 years ago. I've used all thd products OTC or RX. Nothing has helped. I now have 3 permanent tooth that have slowly fallen out. 1 front with crown has to be pulled and I have a problem with my hard palate that will ever allow to wear total dentures. I'v been given an amount of work that would be over 4,000 dollars. And I certainly don't have that. One of these teeth has a bone that protrudes into my gum and upper tooth. I live in TN and we have many areas with free dental clinics, however, there are none close to me and I do not lived close to a dental teaching program. I have had Sjorgens for many years and it has caused me many problems. But this dental thing is horrible. No help with medicare or tn gov. Good luck to you all. 
Posted @ Friday, October 24, 2014 5:12 PM by Karen Brundige
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