Salivary gland stones sjogrens

General
1

Hi Everyone,

I have Sjogrens as well as Lupus. In the past I have got stones in my gland that is just below your ear and the gland got swollen and infected. I had to take lots of antibiotics- which made me sick to clear the infection. Now I have a stone in the salivary gland under my tongue and it is all swollen and I am talking with a lisp (sp?). The doctor said that they would not do anything about it unless it gets infected. I am worried it is only a matter of time until it gets infected. The doc suggested eating sour candy to try to get the saliva to move the stone.

Have any of you had salivary gland stones? How did you treat them?

I feel like it is one annoying /painful thing after another with the Sjogrens and Lupus. Is there a way to prevent these stones?

Thanks for your advice,

Meg

2

Meg,

I am really tired right now but will try to explain this....well yes i have had them and they hurt. they do not come from any disease...this is one of those times where you just are sick like anyone else.

they tend to be made from calcium but this does not mean you have to much calcium in your body!

As to infection...it does not sound like they do...so try not to worry. sometimes they just pop out in your mouth all on their own!! Often they just go away on their own..

But they are nothing really to worry about...i am going to give you the link....so you can read about them and calm youself down.

At times like this...i really urge people to carry around Bach's Rescue Remedy...it is great tincture to use for exactly like these situations where the unknown is scary and your imagination can get the better of you. It just calms you down....if you are lot of Pain...it will give you some relief so you can use rational thought in to what is the next step.

here is the link; http://www.patient.co.uk/health/Salivary-Gland-Stones.htm here is what is actually on the page too plus the do have discussion forum.

On this page

As with most stones....it says to drink plenty of fluids to help prevent them...if i got it right lol! so sleepy seeing double...but i know how it is like to not know and feel everything now is about lupus when so many things are not. Good luck and God's speed in recover! loree

3

I forget the name of the drug but there is a prescription med to increase saliva Also oil of primrose is reported to help

4

there is a drug...but the dangers it has is not worth it for just her stones. My dentist wrote it out but insisted my Rheum write the actual RX and do all the monthly follow up test. It can damage organs and must be checked monthly if i recall correctly.

My stupid rheum doc refused..said my mouth was not that dry...which was joke because i had to carry spray..suck on hard candies etc plus was losing teeth due to dry mouth. When i went to see him 6 months later.....and i had lost front teeth...he than said he would...my dentist had told me it was too late. I told him and said why did you not listen to eiter I or my dentist before. Now i have to go around with no front teeth...i am going to lose all my teeth and have dentures at 50!

He said nothing....I should have really filed a malpractice or complaint...i was so ashamed to go around with no front teeth ..Dentist had to wait for something to occur...as soon as that did...they pulled all my teeth that were left. I took great care of my teeth all my life...I still get mad when i think about this...he just never would listen to how much pain i was in.....yet he gave my husband a known drug /alcohol addict in recovery... Oxycontin ...one of easiest addicting drugs! Even my husband said he was favoring men...every woman patient i know who saw him. liked him at first..than he just never heard you again....all ended up frustrated beyond belief! i asked to go to his partner and he denied it.

He has flat screen monitors in every exam room...so he can show you your chart that way....just wasted expense on gadgets and he has tons of them. They are only 2 rheum doctors in this area....for two hours one direction...and almost 4 other way.

sorry...dentures are not fun..and make me feel hundred years old. i cannot afford implants...there is this other technique i just read about where dentures clip in kind of permanently.so they do not slip around like now...i might do that. if i can afford it. Again...sorry...

But Both my dentist who was really good...and that doctor said that drug was very dangerous and they do not like to use it do to the risks involved..but i had hit that point...i do not think stones would really be worth it since they should just go away...worse small in/outpatient surgery.

i hope that link really helped you sincerely....lg

5

http://www.ncbi.nlm.nih.gov/pubmed/9060088

I disagree that there is no link between Sjogrens and the formation of stones. There are scientific papers and studies have have demonstrated links. One theory is that becuase you don't have enough saliva flowing all the time the calcium and minerals are sitting in the duct and that makes you more prone to getting stones. There are also studies that show the auto-antibodies some people with Sjogrens are involved.

I have so many dental problems too due to the dry mouth. Everytime I have gone to the dentist I had soo many cavaties and I would feel helpless, I don't eat candy and I brush my teeth but now I know it is becuase my mouth is so dry all the time.- I am 30 and sure i will get dentures before I turn 40.

The link you gave basicallly said that they don't know the cause, that they may come out or have to be taken out. I am sorry that you had to go through this with your doctor and dentist.

Meg

6

The medication that helps with saliva production is Pilocarpine (brand name) salagen (generic name).

I would wake up in the morning talking like I'm drunk and/or my throat would stick together so I couldn't swallow. The rheumy kept telling me about it, dangling the option for months. After a year of her telling me about it, she presribed it.I think she was a bit hmmmm.

This med is not a "cure-all." It helps . I am fairly dry taking it, but less than without it. I have to chew sugarless gum or suck candy to get the saliva going. I have to drink water when I eat.

7

Hi there MegLupusNewbie, i also have Sjorgrens, and have the same problem, the same area gets very swollen on my neck just underneath my jaw bone too sometimes, it gets really painful sometimes. My doctor gives me this false saliva spray which seems to help in some ways, as i do have problems getting my food down. I also get these horrible things under my tongue and end up talking with a lisp too. People often think its because i may of been to the dentist, hehe. I find the best way to help with these salivery gland stones, is to keep good dental heigene, and also it helps with what you are doing eating the sour candy to stimulate the saliva, i once had some paste stuff from the doctor, but didnt really find it helped that much, i think the best thing is to let them run their course. I find they tend to happen more when i am run down and stressed. You have been very unwell, and very stressed lately. I dont think there is alot you can do really, my doctor just has a feel of the areas for these and looks under my tongue and thats about it most times, and says its due to me having a constant flare as i have been for a couple of years or so. I have never had a remission period, i have had days where i have felt a little better than others, but never a time when the Lupus has really calmed down. I remember this one week when the ESR went really down, and we were thinking whoopie, i am in for some better times, then the following week, the ESR went sky high again, and i was back to feeling really bad again, so i suppose that was a sort of remission when i had a week where i was feeling abit better. I do feel for you, as i know what its like, and its frustrating too especially when we cant talk properly eh? I think people we know find it hard to understand all these things we have going on, so its lovely we can come onto LWL and chat with people who do understand whats happening. I shouldnt think these stones will become infected though, so dont worry yourself too much, although easier said than done sometimes. With these its a waiting game just waiting for them to go on their own sort of thing. I also had kidney stones once too, and they are also horrible. I had to wait to see if they passed naturally, or if i would have to have them broken down. Its abit different to what we are talking about but still painful. I really hope you dont have to suffer too long with them, take care, look after yourself, love and hugs Astrid40xoxo

8

Astrid is right ....as hard as it is to calm down when we are sick..especially painfully sick...the best thing we can do for ourselves is to calm down.

You might try journaling or painting what you imagine the stones look like in your jaw etc. Or build them with clay or any type of item you would like...just something to get our mind to try and calm down. Music while drawing or journaling really helps me too. Small walk in a pretty garden or out in Nature can help.

You might ask your doctor for anti anxiety drug...but mild one but I still try Bach Rescue Remedy..because not only calms you but has benefits for your body as well.

There is medical marijuana that can help calm you too...they come in suckers..so suck on hard candy made out of it! They are not very expensive either...couple dollars at most. Baths...with great book...have you tried just motrin for pain? I still swear it is the best pain reliever. Maybe just having movie night with some girlfriends would help take your mind off it at least for 3/4 hours.

One thing....more often this happens and they do not get infected...as much as it is not fun to have, you will calm down and accept it as just one more than you are going to be dealing with for rest of your life. I have found that often when i get to that point of acceptance...they go away. Kind of like handing it over to God and let him deal with it...seems to work for me.

hopefully you can take a nice bath... put some candles around, and have great book to read! Or maybe your favorite show is on tonight! i just hope something helps you to take your mind off the pain.

OOH i read this once and my hypnotist also repeated it and it works! Your brain can only focus on one thing intently at a time....so if you get your mind to really listen to music, movie even conversation you will not feel that pain. Now if it is really intense pain and you let it get to intense part it will be much harder to do this. Kind of same principals of why they want you take pain meds on steady time so it never gets so high that it is much harder than to get back to low level you were originally at before you let it go.

I often use this when i was out hiking and i began to hurt...tell my husband to talk about anything to get my mind off the pain. Justin concentrate as hard as I could...often he just point out the surroundings, than ask me to name plants and trees, wildflowers. This will also really wear you out eventually but it works!! And you will sleep better than if you did nothing!

I also do the same thing for bad tests that are painful. I put myself on one of my favorite hikes and slowly walk it trying my best to recall every flower, rock etc on that trail. Save me many a time from bad pain and I got to see my favorite place all over again even if just in my head lol!

Sorry i forgot all about that till now...but that one works...i cannot count the number of times i have used it to get through some very painful days and it worked the majority of them..promise!.

sure hope you feel better soon, lg

9

Meg,

I really am not sure if there is direct tie between the stones and auto immune diseases. I can check it out...but this i can tell you. If you want to save your teeth and sounds like you do....really follow everything your dentist tells you to do.

One thing my dentists..i moved so had 2...said that since I drank a ton, this helped greatly with my dry mouth and saving my gums and teeth..it also says that for any calcium stone no matter where they pop out that drinking a ton of water will help stop the formations of them. so drink a lot of water, juice etc!

I do know people who have had them in their kidneys, bladders etc...and they are only people that drink as much as i do. I think my own case...I was very sick where i could not drink like i normally did for about 2/3 years..was in and out of hospital and had fluids but that will not help our teeth and gums plus i was not going to dentist since i was in hospital and just very out of it. Just was trying to get home for good.

My dentist immediately put me on fluoride toothpaste and rinses...plus there is over the counter product that makes decent fake salvia which i would use...yes it was icky and was constantly washing out since i was drinking again...but kept trying. Now there are so many more options..so please do not give up hope.. Also hit health food stores or vitamin stores and check out their products for dry mouth....it is hit and miss finding one that agrees and works for you. I had like 10 sprays....that i constantly kept spraying...got into making my own even. There are places on internet that can help you with this if you like to try making your own. If you have dry eyes....than you have been through this for them as well..trying different fake tears to find the one that works the longest.

As to the drug...i really do not recall what it was..only thing is check the precautions and see if in the notes they require blood testing monthly. Maybe by now..it has been 4 years, they came up with something better i sure hope so.

Oh i also had my teeth cleaned more often and had gum surgery as i needed it....all this i really believe kept it at bay until i got sick ..bad sick ..but eventually i got out and than that is when my dentist said ...lets try and get you back on track but you might need this bad drug...He also said that he wanted to give my body time to heal before trying that drug since it was harsh on the body. So dentist gave me some time...which my body did need..than rheum doctor said no...he knows he made a bad mistake. I just paid for it.

yours sounds like something different and hope it is!...I really do not think dentures have to happen Meg, if both your doctor and your dentist work together p[us you have insurance and the money. I was doing great up until that one thing happen...just bad luck. But i will be pulling for you!! I really have hope for you plus the cost of implants should drop if it should happen...so stall it off till those prices lower...or maybe you can afford those..than really you have nothing to worry about.

BUT my heart goes out about losing your teeth etc...i am not a really vain person but having your front teeth missing really felt so shameful and humiliating. Maybe it was my ego involved because people often would stop me and say what a nice smile...but i tended to smile all the time too. Now..i try too...just feels not the same...i think of diabetic patients...who lose first their little finger or toe...than arm and leg. I feel that is what is happening to me in way.

But i get it that there are many people much worse than I....so try to remember that and let go of it.

as i have time i will try and to search to see if it is tied in to certain auto immune diseases....i know that many doctors are beginning to say that Lupus is genetic...but it still has not been proven for sure....just looks like it must be. I do not want my Mom hearing it is...if it does come out...she feel totally that it was her fault ...two of her kids got these diseases from her...i do not want her to feel that way ever!

MegLupusNewbie said:

http://www.ncbi.nlm.nih.gov/pubmed/9060088

I disagree that there is no link between Sjogrens and the formation of stones. There are scientific papers and studies have have demonstrated links. One theory is that becuase you don't have enough saliva flowing all the time the calcium and minerals are sitting in the duct and that makes you more prone to getting stones. There are also studies that show the auto-antibodies some people with Sjogrens are involved.

I have so many dental problems too due to the dry mouth. Everytime I have gone to the dentist I had soo many cavaties and I would feel helpless, I don't eat candy and I brush my teeth but now I know it is becuase my mouth is so dry all the time.- I am 30 and sure i will get dentures before I turn 40.

The link you gave basicallly said that they don't know the cause, that they may come out or have to be taken out. I am sorry that you had to go through this with your doctor and dentist.

Meg

10

I have both and I have heard that you can get stones. I took the medication< Evoxac (cevimeline) that everyone is mentioning, I didn't have any bad side effects. I quit because I am on so many meds and it's exspensive. But if I am told to take it, then I will. It was nice not needing the gels, sprays and lozengers. I have found the best lozengers from Halls to work and taste the best. One night my mouth was so bad that I slept with one in my mouth, probably not the best thing to do. Best of Luck Marie