Raw and Burning Mouth

Does anybody have a raw and burning mouth? Mine just stays raw all the time. I don't look forward to brushing my teeth because it burns so badly. I've lost almost all of my top teeth due to dry mouth and I guess that's why my mouth hurts so much. I asked the dentist about my mouth and he said it looked like every other scleroderma mouth he has ever seen. So. I was wondering if anybody else has this problem and what you do for it.
Kathy

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kathy..I have burning mouth....go to http://www.inspire.com/groups/scleroderma-foundation/discussion/sjogrens-re lief/ there is good information on that thread.

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I thought this was pretty interesting information about potential future treatments for Sjogren's.

Pilocarpine has been tried for dry mouth http://www.ncbi.nlm.nih.gov/pubmed/20664046
and there may be immunotherapy in the future. http://www.ncbi.nlm.nih.gov/pubmed/20384543

Symptomatically, for people with oral ulcers in the hospital (such as when they are on chemotherapy), we (I'm a pharmacist) make up swish solutions that contain sucralfate. This is a prescription item - it came on the market for stomach ulcers-it coats them and protects them,but its not absorbed, or not hardly absorbed.

They also use viscous lidocaine as a numbing agent.

I am NOT speaking from personal experience, though.

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redwood, thanks for the interesting links. I will talk to my rheumy in Jan. about these options (if they are options) particularly the viscous lidocaine. I am in severe pain with this problem and unable to even eat because it is so painful.

Julie, thanks for the link. I will start reading now.

Kathy

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I have burning mouth as well. It hurts so bad to brush my teeth. I have not lost any of my teeth yet but can see how this could lead to that. I'm curious if you have receding gum lines. I have huge pockets under all of my teeth in the gum lines (receding gum lines). I have two teeth that are extremely loose and am afraid I might loose them. My dentist as well said this is due to the scleroderma. She asked me if I grind my teeth when I sleep and I told her that I know that I don't because I have to sleep with my mouth open because I have terrible sinuses.... she said that is common with scleroderma patients (to have sinus troubles). I felt comforted that she knew something about the disease. Because I have dry mouth she suggests that I regularly swish my teeth and mouth with water that it is important to aid your mouth to not being so dry.... but that is a constant battle for me.

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Cheryl, I am so sorry you are having this problem as well. It is miserable, isn't it. It sounds like you will probably lose those 2 teeth that are loose, but at least your dentist is able to fix that problem. One of the problems with all this dental trouble is the darn cost. I have dental insurance but it hardly touches the expense. My dentist told me that cavity is a big problem for dry mouth. He has also told me to use Biotene mouthwash several times a day. My rheumy mentioned a medication that can actually make your saliva glands start working somewhat, so I'm going to ask her for that in Jan. It's really to late for my mouth but I hope you can get a handle on your problems early. I do have the reciding gum lines. That's a pain also. It seems like is going right with my mouth these days.
Kathy

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Restasis eye drops are used to actually get the tear glands working again in Sjogren's. I'm thinking that researchers need to find out WHETHER this chemical, dropped in the mouth, works for getting the salivary glands flowing also. DON'T try that! But the researchers need to check out the effectiveness and safety of it to see if it might help out in the mouth. Just a thought.

Medical doc-researchers - please get going on this!

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Thanks Kathy for taking the time to reply. I have said this before.... this disease is somewhat new to me and this site as well. I am so thankful for this site. People here on this site seem to be more understanding as to what I am going through than my doctors. I know they see so many patients that have so many complaints. But as for us as individuals, we suffer with these symptoms.... that can make us feel so alone. I don't feel so alone now and receive comfort from this site when others share their symptoms and take the time to write about them and reply to each other. I have had weird symptoms all my life and got used to ignoring them because doctors did not understand or could not find anything wrong. Until recently at the age of 52 I did not know what was wrong with me. It recently got to the point to where I could not ignore my symptoms anymore and received the diagnoses of scleroderma. It took years of putting pieces to this puzzle together (for me) to figure out what it is that I have. Thanks again, Kathy (and to many others) that are so willing to share their experiences and what works for them.

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yes redwood i take that solution u mentioned and it really works..so far ive been really blessed i havent had the ulcers in the mouth in a while when i seen this post i was going to get the solution but u saved me from getting up..lol..now i no for sure this works for me i have limited sd i use to get ulcers in my mouth all the time...so for u all who get sores in the mouth please give this a try it may jus work for u...God bless..and once again thx so much for ur repsonse redwood...

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Hi, Kathy!

I have taken the mixture mentioned by Redwood. The pharmacist referred to it as "chemo mouthwash" and I have heard a number of people refer to it as that, so you should be able to ask for it. The lidocaine will numb everything it touches (at least it did for me), but it might be preferable to pain.

Hope that helps. Take care and hope you had a lovely holiday (despite the bad feelings in the mouth).

-Kate

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Hmmm. I did another search and found out there has been some research on Restasis (Cyclosporine) on the submandibular glands of rats, and they found out that it actually decreased the effectiveness of pilocarpine in helping salivary flow. The article is at: http://www.ncbi.nlm.nih.gov/pubmed/8644119 . So, as I said, don't go putting Restasis drops in your mouth!

Pilocarpine does work, but be careful not to overdo it. Overdose can cause visual accommodative spasm (blurriness especially for distant objects), tremors, nausea, vomiting, diarrhea, troubled breathing and other stuff.

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I have a terribly sore mouth and hate brushing also!! I get sore throat a lot too, usually on one side only. I suck on those frozen pops everyday and that helps me with the dry mouth. They are cheap and taste better than ice chips;) All these symptoms to deal with can really wear on a person! Dealing the best I can with what GOD gave me though....best of luck to you all!

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I am not sure how well the Biotene products work for scleraderma specifically, but it is probably the best option for OTC treatments. It has natural enzymes that are in the saliva to begin with. May slow done some of the decay process. There is a whole line with the best starter being the Biotene Oral Balance oral gel. It stays with you longer than the liquid based ones. Good luck

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Thank you all so much for your suggestions and comments. As usual on this site, I do not feel so alone with my problems. The suggestions were great! I've made a list to take to my doctor so maybe I can get on something that will actually help the problem. The Biotene has helped but I think I'm way beyond that being enough help at this point. It's terrible when your own mouth is making you miserable, lol. Thanks again everyone.
Kathy

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My tongue stays red, sore and burning more so than my mouth. I use OTC Biotene mouth rinse, mouth spray, gel, and tooth paste. It really helps! I also found that the spray (which has enzymes) helps to take away the nasty taste in your mouth from GERD. That was a nice surprise. At our WalMart, it is found a little further down from the toothpaste where they put specialty toothpastes, etc. I really like this stuff and you can use it when needed. I keep a bottle of the spray by my bed and also in my pocketbook. Hope this helps!! P.S. If your store or pharmacy does not carry it, the pharmacy can order it for you.

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I have been suffering from burning mouth syndrome for 6 years now. I correlated it to a root canal where the dentist inserted cheap base metal in the crown - which set my body off in crisis mode! My symptoms seemed to calm down once I put two and two together and figured out that it was the cheap metal in the crown filling that was setting off my body, to become extremely red, burning, itching, and the extreme burn (not on top of the tongue - but inside the tongue symptoms).

with doing alot of detective work I discovered a condition call NCS (Neuro-cuteous- syndrome) caused by cheap base metal used in dental prodcedures.

I wanted to share my experience with you just incase any of you have had dental procedures then your mouth started to burn.

I'm on the site because my Aunt had C.R.E.S.T. Now I'm learning everything that I can about this syndrome.

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