Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 --le, I have suffered from mouth ulcers practically since RP started back in 1979. I haven't heard from anyone else who does, until you. They were so bad in 1985 (the nursing staff called them my craters) I had to be fed through a nasal gasto tube which went on for a few months. Needless to say I lost a lot of weight, but the steroids soon took care of that! I still get a lot of them, along with a very sore mouth. I haven't really found anything that helps, have you? Anne C - In Rpolychondritis@y..., jasidan@y... wrote: > > > > > About the teeth... I have sensitive teeth and get infection easier > in my mouth now that I have been on the immune suppressant. We have > looked into the filling stuff and lots of other angles as far as this > darn RP goes. I think if you would like to check out some of the > surveys you can go to the group site to read the results. Also I > think there is a survey letter there too. > > > > > > Hi all, > > I forgot to ask, does anyone get mouth ulcers? I usually get 5 just > before a major flare. When I was very young, I had them all the time, > the docs said it was a vitamin B deficiency, but taking B did not help > at all. > le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 > --le, > I have suffered from mouth ulcers practically since RP started back > in 1979. I haven't heard from anyone else who does, until you. They > were so bad in 1985 (the nursing staff called them my craters) I had > to be fed through a nasal gasto tube which went on for a few months. > Needless to say I lost a lot of weight, but the steroids soon took > care of that! I still get a lot of them, along with a very sore > mouth. I haven't really found anything that helps, have you? > Anne C > Hi Anne, I haven't found anything that helps, except hot black tea with milk (i'm part english), and a chocolate bar. LOL That is usually the only thing I can swallow when I get these. (I usually get hersheys kisses, drink some hot tea, and eat a kiss, they melt faster! LOL) They hurt and it is murphy's law when I have one, I will usually bite there, and that hurts. Seriously though, I usually find that the hot tea, or hot soup, like chicken broth or beef broth, I can swallow, but I can't chew anything, and mine usually last for about 2 weeks, and I always get five, 2 on either side of my mouth and one on my tongue. When I get them, it's like my body knows I don't want to eat, and I really don't feel that hungry. It is really hard to talk when you have them, and I drool so much, I have to carry tissues out and ready with me. It is embarrassing! I don't know if you have Ambesol (sp?) here, but it is for mouth pain, but it hurts for the first minute, and I found it didn't last very long. It says you are only supposed to use maybe 6 times a day! I was using it every hour!! A dentist once told me they could come from a B deficiency, so I got a good B Complex and also took Vitamin C, and I haven't had one in a while. Also, and I don't know if this helped, but I started cutting back on anything with sugar, so I am on a really low carb diet, and I have stopped eating anything that is very spicy. I read somewhere, on a doc's website, that it could mean you have too much acid in your system, so I cut back on grapefruits, lemons, oranges etc. With the jaw pain though, I don't know what to do, I posted back to about mouth guards, as I will try anything, it makes my whole head hurt, and I can't sleep. Hope you are having a good day. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 hi Coralie usualy suffer from mouth ulcers;Her doctor gave her a mouth-bath The chemistry have to prepare it.It's a special"cocktail".It's very efficient. Marie-pia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 le, Sandy here. I also have TMJ. You can have a mouth guard made by your dentist. I know some who use the ones Athletes wear, I think you can get them at a sporting goods store. Give your dentist a call and see what he recommends. Sandy --- In Rpolychondritis@y..., colmananne@h. With the jaw pain though, I don't know what to do, I posted back to about mouth guards, as I will try anything, it makes my whole head hurt, and I can't sleep. Hope you are having a good day.leDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Hi le, Lucy here, Yes, I have been pestered with mouth ulcers all of my life it seems. Once, my Dr. in Alabama gave me a Smallpox vaccination to see if that would help with them. Not much success. I have found only one thing that has helped any at all and that is using Rembrandt toothpaste made especially for the prevention of canker sores. Try that and see if it will help. I don't know about you folks that are plauged with the darn things, but if I bite my lip or tongue, I know that it will be followed by a sore. I then have to endure the ulcer for days before it will go away. I do believe that the ulcers and RP are kin!!! There just has to be some relationship of the two. Let me know if you all come up with anything else concerning these things. Love and Prayers, Lucy le, mouth ulcers > --le, > I have suffered from mouth ulcers practically since RP started back > in 1979. I haven't heard from anyone else who does, until you. They > were so bad in 1985 (the nursing staff called them my craters) I had > to be fed through a nasal gasto tube which went on for a few months. > Needless to say I lost a lot of weight, but the steroids soon took > care of that! I still get a lot of them, along with a very sore > mouth. I haven't really found anything that helps, have you? > Anne C > > - In Rpolychondritis@y..., jasidan@y... wrote: > > > > > > > > About the teeth... I have sensitive teeth and get infection > easier > > in my mouth now that I have been on the immune suppressant. We > have > > looked into the filling stuff and lots of other angles as far as > this > > darn RP goes. I think if you would like to check out some of the > > surveys you can go to the group site to read the results. Also I > > think there is a survey letter there too. > > > > > > > > > > Hi all, > > > > I forgot to ask, does anyone get mouth ulcers? I usually get 5 just > > before a major flare. When I was very young, I had them all the > time, > > the docs said it was a vitamin B deficiency, but taking B did not > help > > at all. > > le > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 > > > > > > > > > > > About the teeth... I have sensitive teeth and get infection > > easier > > > in my mouth now that I have been on the immune suppressant. We > > have > > > looked into the filling stuff and lots of other angles as far as > > this > > > darn RP goes. I think if you would like to check out some of the > > > surveys you can go to the group site to read the results. Also I > > > think there is a survey letter there too. > > > > > > > > > > > > > > Hi all, > > > > > > I forgot to ask, does anyone get mouth ulcers? I usually get 5 just > > > before a major flare. When I was very young, I had them all the > > time, > > > the docs said it was a vitamin B deficiency, but taking B did not > > help > > > at all. > > > le > > > > > > > > DISCLAIMER!! > > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS > RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR > BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR > PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND > TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 > > >le , My mom use to get these mouth sores , some of them the > size of quaters . She couldn't eat or anything for them . Her doctor > gave her a dental paste , might help you , it always help mom in a > couple of days . It looks a lot like brown sugar and coats the > sores .The name of it is Kenalog 0.1% oralbase oynt. Hope you can use > it and it helps . Sending good thoughts . Sherry Hi Sherry, I have tried that before, but didn't know I could get that here. I will hunt some down. thank you for reminding me, I forgot all about the Kenalog. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 le , Mom got hers from her regular doctor , of course he is a great doctor . You might check with your doctor first to see if he /she will write you one . Sherry jasidan@... wrote: > > >le , My mom use to get these mouth sores , some of them the > size of quaters . She couldn't eat or anything for them . Her doctor > gave her a dental paste , might help you , it always help mom in a > couple of days . It looks a lot like brown sugar and coats the > sores .The name of it is Kenalog 0.1% oralbase oynt. Hope you can use > it and it helps . Sending good thoughts . SherryHi Sherry,I have tried that before, but didn't know I could get that here. I will hunt some down. thank you for reminding me, I forgot all about the Kenalog.leDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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