This began for me long before a diagnosis. Long as in decades long. At present, I am down to 7 teeth of my own, I wear a full upper place and a partial below, which can surely aggravate the Sjogren's. I do not have it in me to go through implants, probably never will, but I have heard good things after the healing process is over.
I feel certain that most of us are diagnosed with xoerstomia, rather than Sjogren's.
I’m so sad to read of your suffering, SK. So far, only one member here as far as I know/recall has had very good dental health exams. (Lots of flossing and brushing). Would like to hear more and from others. I bought a 15 magnification mirror with little suction cups on the back and it has a tiny light on it too. I put it mouth height on a wall. Just got it. So, I can floss standing up looking in this mirror. I don’t need my glasses. I can floss much faster this way and don’t mind flossing more than once per day now. Another SS patient told me its imp. to use a water pik daily or at least several x a week… on top of flossing! Working on that next. I’m getting mixed reports on whether a hand held soft bristle brush is best vs an electric TB. I might use the hand held during the day and the electric at night before bed. ??? I already lost a tooth due to Trig. Neuralgia stupidity. I dry hard to take care of the dryness. I do think it’s a great idea for us to share our ideas and successes here!!! Thank you.
PS I get a professional cleaning every four months.
OMG! Although my diagnosis is recent, I've complained about dry mouth for probably 20yrs. I'm so sick of dental hygientists telling me to floss more, brush more, and basically making me feel like I don't have good dental habits. I'm now loaded for "Bear" when I hit the dental chair. These people need to be made aware, when patients complain about a dry mouth along with other issues like decay around the gum line. Maybe it's Sjogren's.
Practically every tooth in my head is capped. Another tooth broke last week. It's never ending.
Fortunately, I have had no issues with my teeth since my diagnosis about 2 years ago. My dental exams have been good. I was already taking Plaquinel for Rheumatoid Arthritis, so my medication regime didn't change. My dentist prescribed Clinpro 5000 toothpaste to use at night and Biotene mouthwash in the mornings. I have been using a Sonic Care toothbrush for about 5 years. (There are so many days that I wouldn't be able to brush with a manual toothbrush due to wrist/hand pain). The Biotene gel is amazing for the daytime dry mouth. I use a flossing handle every day to floss with, again, many times it wouldn't get done due to the pain. I hope my contribution helps someone. It's very frustrating to have multiple auto immune diseases stacked up, but from what I read, they "run" in packs...
I too have a lot of dental problems, over the years. I just had a tooth pulled, a root canal, and am getting my permanent bridge put in tomorrow. I agree it is very hard to floss, brush and take care of 'anything' you need to use your hands with....I need to have hand surgery. It's my dominate hand, so I'm procrastinating.....oh about 7 years now !!!!!!
I just started using an electric toothbrush, but not crazy about it. I also need to get a waterpik. I think more people with SS, should check into these items. If they haven't yet started to have tooth and gum problems, maybe they can be avoided.
My dentist actually told me to talk with my rheumy and sent her a letter stating he thought my oral problems were do to autoimmune issues. Unfortly he retired and i havent found a new dentist yet. I cried when he told me he was leaving to enjoy time with his wife. I guess since he was 80 i should have been more supporting of his decision it just seems when we get good doctors they retire or move
My dental health is horrible and I feel for you. While I still have all but 4 of my teeth I recently went to a new dentist and there is decay in most of my teeth that needs to be fixed. I went to a holistic dentist a month or so back and I need to have significant work done. The problem is the cost. Plus a great deal that a holistic dentist does is not covered by insurance. He only does porcelain fillings. It was interesting to learn about how each tooth effects different parts of the body (tooth acupuncture). One of my front teeth had a root canal that per the x-ray wasn’t done properly. My understanding is that a root canal done on an upper front tooth can create more sinus issues-which is one of my major problems. The dentist also shared that I was in an interesting situation because while xylitol helps with my dryness he said it isn’t good for my teeth.
I have aslo suffered for many years with the teeth problems. Ever since I was a child I have had many abcessed teeth and many cavities and extractions. This was way back when they used eather to put you under. At the present time after countless root canals and apicoectomies have lost 10 teeth. I was at the dentist this year and they put together a treatment plan for me that would give me a partial upper and lower plate. There is some bone shaving that needs to be done to allow a lower plate to fit. Besides the fact that it is well over 7 thous. dollars out of pocket I do not feel well enough to start any of the procedures. I feel like if I open this can of worms and go in for all this work that my body simply will not recover. This sounds stupid and childish to my husband who by the way dosen't believe in autoimmune diseases but it's truly how I feel. With all the other things I have going on right now I do believe it would cause me harm. I'm sure someone in this group can relate with this feeling. I also believe that dentists should be educated about the effects of sjogrens on the teeth. It would have saved alot of money not to mention the pain of the dental surgeries.
All I can say is that I worry about my teeth on a regular basis. Tired of worry!
Ah, sadymay! So sorry that your husband is so unsupportive! How can you not believe in autoimmune disease? Maybe he is just not good at accepting that you are that ill?
I've used a sonic toothbrush for decades, floss and I also use the wooden picks and the rubber tipped gum stimulator. All of my remaining teeth have exposed nerves, so Lyrica was a big hit for me!
My DDS, and an oral surgeon have assured me that I will rue the day I ever have to get a full lower partial, but it's coming!
I know, Karyn! My present big worry is the eye specialist!
My dental problems also started long before my diagnosis. It reached such a severe point I ended up in hospital with dental sepsis on intravenous antibiotics and that was the beginning of a long and torrid journey. The dental infection came at what we now realise was a particularly bad episode of the SS. I developed massive lymphadenopathy, so severe I didn't have a neck (the nodes and salivary glands were large chicken egg size, rock hard and hot. When they did CT, MRI and x-rays and they stopped counting my swollen lymph nodes in my chest at 30, only to find that the ones in my upper abdomen around my liver were huge also. I was so weak and feverish I actually wanted to die. Then when the Trigeminal Neuropathy started and I woke up in hospital on day two, all the blood vessels in my eyes had ruptured and I looked horrific. The pain in my face, behind my eyes and the perpetual headache was compounded by the air conditioning and I coudn't get enough pain relief (I am intollerant to morphine and codeine and have GIT bleeds with Non-steroidal anti-inflammatories, and because of the infection, they couldn't and wouldn't put me on cortisone).
So after fine needle aspirates of some of my throat nodes, they told me I had Lymphoma. I started preparing myself mentally for what lay ahead. Then the serology came back, all the teams were mystified, what we now believe happened is that somehow (probably in the course of my job in a pathology lab) I contracted a disease called Q-fever. Nasty little critter usually only caught by abbatoir workers in this country - and of course I am severely allergic to Doxycyline, which is the only known antibiotic to kill it. The Q-fever is know to cause autoimmune and abnormal immune responses as it's a tricky little devil that can hide in cells for many years sometimes. So more batteries of tests, including full lymph node excissional biopsies - which showed the disease was mimicking lymphoma. Lucky me.
Then other neurological symtoms started appearing, the worst is the tremoring, some days so severe I can't hold a cup of tea or brush my hair properly, muslce spasms and twitching that look like severe Parkinsons (no it isn't, nor is it MS). with weakness that on my worst days means I have trouble standing or getting out of bed, numbness in hands and feet or worse, pins and needles or burning sensations followed by exagerated sensations and severe muscle pain, incontinence and digestive upsets. It cycles - I can be like that for 10 to 14 days and wake up one morning feeling almost normal other than the terrible terrible fatigue, dry eyes, mouth and the trigeminal neuropathy.
I finally got treated for the Q-fever about 6 months after being released from hospital, it took a lot of hard work on the part of the ID & immunology guys to get Doxycycline desensitisation treatment from the USA for me, and I spent a few days in intensive care having it injected IV every 20 minutes in cycles until I stopped reacting to it. Followed by a four month course of oral meds. (Still no Prednisolone)
The cycles have been like that for over two and half years, but becoming more frequent and longer in duration. Being bounced from doctor to doctor (and running out of money to pay for it all), with no-one able to pinpoint the problem. It took a broadly educated, smart, infectious diseases specialist to work it out.
So it appears I have Systemic Sjogrens with CNS involvement, I have another CSF review to go through and they are also trying to work out if it has gone into grey matter in the brain, but in truth it doesn't matter right now. They finally put me on immunosuppressants and most of my worst neurological symptoms have significantly reduced or gone for now, which is a relief at this stage.
Currenty I am at the mercy of our national health care system, as I no longer have any insurance and although I will be seen, it won't be timely as the waiting lists are between 4 and 8 months long (that's for one appointment). I should be thankful I suppose, at least I'm not completely out in the cold without any care. But unfortunately our subsidised dental care for problems related to chronic health issues was scrapped in December because of the global financial problem, until then all my dentist visits had been paid for by Medicare. So now it is unafordable to pay out of your own pocket for visits unless you take out a short term loan or go on a repayment plan some of the dental practices have started up. My TMJ on one side is now terribly painful all the time and keeps dislocating. It's the side of my face that is worse and apparently I grind my teeth in my sleep which isn't helping. The dentist wouldnt fit me for a dental splint because he says that the joint and teeth that side are so unstable it's likely to make things worse.
I'm prattling, sorry - I don't have anyone to talk to about this, my family unfortunately are a long way from me, not very smart, caring or understanding, and definitely not supportive. I am remaining optimistic in spite of how much an uphill battle it has been (including my GP who for a long time told me my symptoms were in my head until he got copies of my results), he was happy to prescribe antidepressants and sedatives and refer me to a counsellor though.
Now, he says my case is too complicated for him. I'm in a small country town with few medical services of note, so changing doctor isn't an option right now, better the one you know than the one you don't - right?
The specialists are in another city about three hours drive away, so it's not like I can just drop in on them at short notice if there is a problem or they want to review me. The tyrany of distance here strikes again.
I think I've unloaded most of my main frustrations - sorry for the long winded post.
I guess that's why I'm here, a little understanding and support.
Tog
Tog, what a dreadful, frightening story. I have never heard of dental sepsis and many of these other things you mentioned. You are lucky to be alive. You are a strong woman! It is so important that we help one another. I’m deeply conflicted about the medical profession at the moment and it’s worse when you have an illness they are unfamiliar with.
Sandmay-My new dentist said he wouldn't even start working on my teeth until the infection was gone. He told me that if he did it would create more problems for me. I can completely understand you wanting to wait. I had a tooth pulled a few months ago and it completely drained me and took a few weeks before my fatigue subsisted. I can also relate with the cost. I called to get preapproval and was told the codes were covered. Then after going to the dentist I was told the treatment was excessive and they covered very little of the cost. My husband also struggles to understand my SS and I believe he often thinks I'm overeating.