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Discussion Starter · #1 ·
I just read this article and I don't ever recall reading an article that said that the mouth sores were painful and this one does. I wonder if this is new, I put the link below.

My mouth sores are always painful, usually white. Lately I have been getting sores on my jaw bone where the top and bottom jaws meet in the back of the mouth and they are more clear looking, maybe fluid filled, but still are painful.


http://www.lupus.org/webmodules/web...ew_aboutaffects.aspx?articleid=1456&zoneid=17


Take care,
Lisa
 

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I used to get very regular mouth sores which thankfully I haven't had at all since starting plaquenil etc. and they were quite painful. Of course by the time I got diagnosis they weren't around and the rheumy never saw them so I don't know if mine were typical or not but they were very hard to get rid of, often taking up to two weeks to go..

Katharine
 

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Hi Lisa,

Interesting article, thanks for posting it.

I think it demonstrates the different types of oral ulcerations we can get. I mainly get the ones on the roof of my mouth and I think they are painful because there's not much flesh up there and eating anything seems to scrape them. The others I get are on the inside of my cheek and don't seem to bother me as much.

When you are flaring eating is one of the few joys we get :hehe: so getting something to help with the ulcers is a good idea (I am using a steroid mouthwash solution right now).

What the article said about disease not being that well controlled when ulcers are often present is true though. I've had a recent ongoing flare-up and had to increase my meds. One hint pointing to that was resistant ulcers for weeks on end and recurring with monotonous regularity. Something I hadn't had for quite a long time since starting Plaquenil and Imuran. I only got them occassionally once I started on those meds.

love
Lily
 

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Discussion Starter · #4 ·
Katharine,

I too have had less mouth ulcers since on Plaquenil and they don't seem to last as long when I do get them.

Lily,

I think my ulcers are more from too much stress. I had a vaginal one and then a few days later my mouth started. Right now, I am stressed about everything and when that happens I am not sure that increasing the meds would do any good. I just need to try and calm myself down, but right now it is very hard. In a few weeks after I move I think things will be much better. And once things calm down, I am sure I will catch a cold...lol....seems to be my cycle.

Is the mouthwash that you use a prescription?

Take care,
Lisa
 

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Hi Lisa,

You're right about your ulcers cropping up because of high stress levels which in turn is stirring your lupus up. I hope things settle down for you once you have the move over and done with.
Those vaginal ones smart :eek: I was flabbergasted the first time I got them, it was my early days here (some 7 years ago now) and I was thinking all sorts of things and throwing glances at my husband and wondering what the heck was going on. Everyone here reassured me that they are quite common in Lupus - what a tortuous disease this is !!

The 'mouthwash' I have isn't a mouthwash until I make it into one. It's actually a type of prescription steroid tablet (Dexamethasone 4mg) which I can either grind up and put directly onto an ulcer or mix it with water and swish and spit. It works a treat. It would be easier if they made an actual mouthwash with this stuff in it but they don't and my doc said it should clear them up fast and I can use as needed, he was right, it works.

love
Lily
 

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I had some mouth ulcer stuff from the doctor that was a very sticky medicine. You kind of swilled it around your mouth and then swallowed it. Seemed to work quite well. I don't usually bother getting anything when I have small ulcers on the sides of my tongue, or the inside of my lips. Its just the bigger ones on the roof of my mouth that really hurt. The tongue ones hurt too, but seem to go away fairly quickly.
 

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Hi Lisa,
Interesting article thanks for posting it. This is for me too the first time I've seen written categorically that lupus mouth ulcers are one and the same as canker sores, its just for us they come more and worse and are caused by the disease , not just 'bad luck'.

So thanks. BTW, mine are usually painful too:worried:

X C X
 

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Hi Lily,
I have had sores on the roof of my mouth occasionally,but I just wanted to ask you if the roof of your mouth itches?mine does quite often and it drives me mad!
Julsie
 

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Hi julsie,

No it doesn't itch. But from experience (myself and my son) who both had pretty bad allergies, that's a classic sign of an allergic reaction.

love
Lily
 
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