[Steffanee]

Hello everyone,

I am on my 7th bout of mouth sores. I am getting them in the same spot each time it happens. Does anyone have any suggestions??? My Rhemy said..Yep normal with Lupus. (no help) and my GP gave me Lidocaine in gel form so I can swab them. It helps to eat and to fall asleep.

After having Lupus for 4 years why now, since last Novemeber, do I get these mouth sores?? Is it part of flaring??

I am frusterated with them. (I really like to eat food!!) haha

Any thoughts would be great!! Thanks!!!

 

[annada]

Hi Steffannie,

I don't know much about the mouth sores that are only on the roof of the mouth, but I do know alot about Lychen Planus and the severity of living with constant pain with that condition. The past several years this has been a way of life for me. Just eating is a constant reminder of being uncomfortable but it is better than it was during the first year. I don't mention it to my family anymore, it's just how it is for me now. I just hope that someday things will be "normal" again, to be able to eat and not think of it anymore, until then I will deal with it.
My dentist prescribed the Fluocinonide 0.05% to swab a bit on at bedtime and to keep my mouth rinsed with salt water morning ,nite. Some of the meds the ENT prescribed burned my mouth so badly that all he said was sorry that's all can do , just treat it with anything that will sooth it and perhaps someday it will go away just as it came. You might try to Google Lychen Planus and see if there is anything there you could try for your situation.

Best wishes,
Annada

 

[Lily]

Hi Stef,

Yes it's part of flaring, one of the joys of having Lupus. I hate the ones on the roof of my mouth, there isnt much 'flesh' there and they seem to hurt all the more. The Lidocaine will numb them, but I am wondering how you are feeling generally and what meds you are on right now............it sounds like things are a bit out of control.

I usually use a baby's teething numbing gel when they are bad and rinse with salt water, but I think in the States there is something else that docs can prescribe that helps heal them up. Hopefully someone will come along with suggestions.

love
Lily

 

[LoopyLoo]

Hi Stef,

I know how you feel as my mouth is a war zone right now. I use a mouthwash (Gengigel), a steroid paste (Ardcortyl in Orabase) and a steroid tablet (Corlan) when it's really extreme.

I am in the UK but I'm sure others will come along with additional suggestions.

It is horrid and even the temperature of food can aggravate them.

I hope you get some relief soon.

Hugz,

Pam xxx

 

[jhmom]

Hi Steffanee, I too suffer with mouth sores when I am flaring. My rheumy has given me 3 meds that really help, an Rx paste, magic mouthwash and daily doses of folic acid. My rheumy said I can take 1-5 1mg tabs a day whatever the magic number is that keeps them away, for me I take 3-4 tabs a day. The mouthwash is good for the sores on and under your tongue and roof. The paste is good for inside cheek, etc. I sure hope you get some relief soon! Take care

 

[erenae1974]

Hi Steffanee,
I too have had mouth sores, which is just part of having lupus. I have had the one on the roof of my mouth for about 3 years now, with others that come & go. I know how much it sucks! i use biotene toothpaste & mouthwash, never chew mint gum, and avoid spicy things. These seem to keep it at rest, although never does it go away. I have tried just about everything the dr. has thought of to get rid of it, just wont' go away so it's something I have to live with. I know, so far I'm not much help, but maybe one of these will help you: folic acid, the biotene, magic mouthwash, steroid cream, kenalog in orabase, salt water rinses and avoiding the stuff that irritates it most like the mint, spice & hard stuff. Sorry you are suffering from this, it's terrible, i know.

 

[Steffanee]

Thank you for all your help!! I have to laugh when I can get some info or help from you guys, sometimes half way around the world, and my Dr was surprised to hear that mouth sores are part of flares!!! Yep, she had no idea. Sigh...... You mentioned the tongune, it seems my tongune will stay put to the spots that are painful!!uch: I think you might know what I mean.

My mouth is starting to heal up again, but thanks for letting me know that others are going thru it and I wont be so anxious the next time it happens.
Yes, I have been extra stressed so it makes sense (now) that I am flaring more, just showing different signs than I used to.

Thank you, all of you!!!:grouphug2: