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Thread: My mouth is falling apart

  1. #1
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    Default My mouth is falling apart

    I keep having trouble with sores in my mouth and pain in my teeth so I went to the dentist today and I have "a few small cavaties on the upper left" of my mouth. This will add to the 2-3 other cavities I have gotten in the past year and a half and until then I had never had any trouble with my teeth and not a single cavity. Yet despite the dry mouth and eyes and being positive for one of the Sjogrens antibodies no one will actually say I have Sjogrens lol I know I do, and I'm pretty sure they know I do but its not in any of my files. I'm happy though because FINALLY they gave me a prescription for 2 different mouth washes that will hopefully help get rid of these nasty sores that I seem to get multiple times each week and will help make my teeth stronger so I stop getting cavities. Its so expensive to get even one filled I'm scared to see how much multiple ones are going to cost!

    Oh and I feel less crazy now because I have been saying to my family and boyfriend how these sores get WORSE after I brush my teeth and my dentist said that actually makes sense. They said that certain tooth pastes have something in it that can actually make those worse and that I should try sensodyne (spelled so wrong lol) so I thought I would let you guys know because I have never heard that before and I felt like everyone thought I was being stupid saying that because it sounds backwards lol
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

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    Ah, I completely understand your frustration. When all of this started with me I swore that I had Sjogren's. When I went to the dentist this past fall I had 8 cavities.. 8! Granted I eat a lot of candy, but I most definitely brush at least twice a day. There were also a bunch of random non-serious symptoms that I put together too. I'm also positive for one of the Sjogren's antibodies as well. My doctor sent me for a Salivary Gland Scan when I first went to see him because I told him I thought that it was Sjogren's and it came back normal. My doctor is very focused on test results so he doesn't think that I have Sjogren's. Since being diagnosed with Lupus I have started to get mouth ulcers. I usually get one or two at a time. The ulcers themselves only last a couple of days and they seem to come in clusters (I haven't had one for a couple of weeks).

    Do you have dry eyes? You should see if you can get the Schirmer Test just to be sure.

    Regardless I hope your new mouth wash helps and that you get some answers!
    Best wishes,

    M

    Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
    Plaquenil, Amlodipine

  3. #3
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    I have done the test for dry eyes once, maybe twice, but they put them in wrong so I think that whether I had bad dry eye or not my eye would have been tearing up because my eye was in so much pain. Soo lol they didn't work. They stained my eyes once and said that there was inflammation but not an incredible amount. Did your cavities hurt? Because I have always heard about how painful cavities are but none of mine hurt. The tooth I actually went in to have looked at today was totally fine and the cavities were on the other side and didn't even hurt when he was poking at them. I never realize I even have one until I go to my six month appoitments.

    My sores also come in clusters and if they are close together they clump and cause a super sore that hurts like crazy for days. I'm not going to worry about the actual dx since now I have finally gotten some prescription mouth wash that I am really hoping will help they acted like it should help a lot as long as I use it every day so heres to hoping Maybe you could ask about them? I will post the names of them later. I dropped the scripts off at the pharmacy and don't remember what they're called lol
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

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    My cavities didn't hurt at all. I've always been one to get cavities (I can't remember a time that I went to the dentist and didn't haa). BUT, never have I had more than 2.. When my dentist looked in my mouth he goes.. Oh, wow. Looks like you've got a few cavities. By a few I thought he meant 3.. but nope! haa I had not idea that I even had one.

    My mouth sores do hurt though. I was confused by it because everything I read says that sores associated with Lupus usually don't hurt. Which, I don't really understand how anything as annoying as a mouth sore wouldn't hurt.

    Definitely let me know the name of the mouth wash and keep us updated on its effects!
    Best wishes,

    M

    Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
    Plaquenil, Amlodipine

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    UGGGHHHH I get cavities all the time even as a child I did. My dentist told me it was pretty normal with all the meds i'm on and the dry mouth. Also he said because the meds make my spit acidic(idk if this is the right term but this is how I think of it) that it's causing more cavities. Also I stock up on that sensodyne that stuff freaking works. You know even when I was a baby I used to get horrible mouth sores so bad I would lose weight because I couldn't eat this continued all the way up until I was diagnosed with lupus and started the meds. Until a couple a years ago I never really associated it with the lupus.

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    The tooth paste is called PreviDent 5000 dry mouth. It is AWESOME. It is seriously the best stuff ever for my mouth. They told me to use it at night but I use it in the morning too because normal tooth paste actually makes my mouth feel worse.

    I had my cavities filled this morning and OMG it was not good. They were in the very back of my mouth and they couldn't hardly reach them. Then they couldn't get the filling material to stay in, it just kept falling out and making me almost throw up because it was going down my throat. They had to change the material to the better expensive stuff which finally stayed in. But by this time I had already been there for almost two hours and my jaw hurt so bad. All of this for 2 small cavitites. My whole left side of my face is numb, my eye hurts because the skin under it is numb and hurts to blink, and my whole nose feels weird. Once this stuff wears off my mouth is probably going to hurt really bad, even the ladies doing it said it was probably going to feel bad later
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

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    Ritz,
    I hope you're feeling better this evening. I've had bad problems with cavities and with teeth that break easily since I was a kid. I never understood why until I read about Sjogren's causing this. If you have dry mouth, even just a little bit, it affects the quality of your saliva and that affects the enamel of your teeth.
    I've had quite a few of my teeth capped, so they are doing better.
    Taking Pilocarpine to help with saliva production can help, as well as using a toothpaste like the one that you've found. I use Biotene toothpaste and rinse, and I take one or two Pilocarpine pills per day.
    Hugs,
    Marla

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    Ritz,
    Sorry to hear that you are dealing with this. I get clusters of sores in my mouth that hurt like crazy. The sores can last anywhere from a week to 3 weeks before they completely heal. Here is the deal with toothpaste, sodium lauryl sulfate (SLS) is the reason why your mouth/sores hurt more when you brush. When I brush the sores feel like they are on fire! So, if you look up SLS-free toothpastes you will find there are quite a number to choose from. The ideal one for you would be one that also provides you a decent amount of fluoride to prevent cavities.

    Good luck and I hope you feel better soon, Samo

    PS My husband, who had lots of cavities but was perfectly healthy otherwise, was prescribed PreviDent and it has really helped: no more cavities.

  9. #9
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    Quote Originally Posted by magistramarla View Post
    Ritz,
    I hope you're feeling better this evening. I've had bad problems with cavities and with teeth that break easily since I was a kid. I never understood why until I read about Sjogren's causing this. If you have dry mouth, even just a little bit, it affects the quality of your saliva and that affects the enamel of your teeth.
    I've had quite a few of my teeth capped, so they are doing better.
    Taking Pilocarpine to help with saliva production can help, as well as using a toothpaste like the one that you've found. I use Biotene toothpaste and rinse, and I take one or two Pilocarpine pills per day.
    Hugs,
    Marla
    Have you ever done a test, or heard of one, where they measure the amount of saliva you can produce in a certain time frame? My rheum mentioned it to me but said that you have to go to some special place to do that test and she doesn't think there is one around me. I didn't know I couldn't just spit for anyone and have it measured lol
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

  10. #10
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    Ritz,
    Yes - I've had that test when I volunteered at the Sjogren's study at UCSF.
    It's no big deal - they just give you some lemon-flavored stuff and then have you to spit into a graduated beaker at set intervals of time.
    Unfortunately, I didn't get the message to stop my meds for 24 hours before the testing, so I had taken pilocarpine and I had used both Restasis and Systane in my eyes. Those tests came back normal - Yay - the meds work! (sarcasm)
    They also did a lip biopsy - at least that came back positive.
    I suppose that you would have to get those tests at a teaching hospital.
    Hugs,
    Marla

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