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Hi,
When you have these sores, do they seem to occur (mostly) in the same places in your nose and mouth? I have these every few weeks and they are usually in the same spot. They are somewhat painful, especially the mouth ones when I eat.

Oh, also, does anyone ever have a horrible taste in their mouth, for no apparent reason? I do, and it drives me crazy, and even wakes me at night and I have to get up and rinse my mouth, which only helps a little. The only time I don't notice it, is when I am eating. I have no problems like sinus, or stomach issues. Also, am not taking any new meds.

Oh, BTW, I have had an ANA 1:640 for 3 years, along with a host of other problems, and my Dr.'s feel some immune issues are the culprit, and am being watched. Other Lupus tests are neg. as of now.

Thanks,
Donna
I was wondering about the mouth sores, do they only occur on the roof of your mouth? When I was researching, those were the only pictures available. I thought I had mouth sores but I really don't get them on the roof of my mouth as much as I do in the back of my throat, under my tongue, and down in that little crevace under your teeth and between your cheek. Mine are painless unless they get bitten for the most part. They also are like a blister, sometimes small sometimes big and they can go away quickly, like the next day or stay for several days. Just thought I'd like your hear anyone's input on the subject. THanks much!
Shawnee :wave:
Mine are always just past my tooth line at the top, and around on the back, just past the tooth line. About halfway towards the roof of my mouth.
The ones in my nose are always in the same place as well, towards the upper front at the inside top of my nose.

Donna
I too have gotten nose and mouth sores for many years now. They always seem to be at the same places. In the mouth they are usually under my tongue or on the gum when the lower lip meets, that real soft tissue. The nose ones are really more painful to me. Would you all believe the Dr.s always told me I had an over acid system and should avoid all acid foods, orange juice, V8 juice, tomatoes, all citrus, U get the picture.

Now I know Dr.s are only human and can't know everything all the time but boy they really missed the mark for many years with me.

May God Bless You and All Those You Love
Patience 50
I don't believe the mouth sores "have to be" in any certain place. Don't know too much about them. Mine were on lower hard palate. And hurt!

I've read these can be painless. Did anyone else feel a lot of pain? I'm curious, too.

Vee
I get sores/blisters on roof of mouth, and inside lower & upper palate on gums near teeth.. Mine look like whitehead blisters (range in size from bebee to small pea) and are not sore until they "break" ... then they get sore (from eating, etc. I guess) until they heal & go away *usually only to reappear somewhere else... I am more often with sores than without now...
Mine are very sore and painful, both mouth and nostril ones. Dr. recommended putting powdered alum paste on the ones in the mouth to help dry them up. I haven't used it in a while. It didn't seem to help much anyway. I don't get them all that often though either. Maybe only once or twice a year. When they come though, they take several weeks to clear up sometimes. Mine too look like white blisters until they pop and they they just look angry red with white surrounding tissue.

May God Bless You and All Those You Love.
Patience 50 :wave:
I have also started getting them, they do not look like a ulcer (crater or hole)...they also look like a white bump/blister with red skin around them. They happen on the insides of my cheeks. They only last a few days and I have read the true Lupus ones last 2 weeks???

I also had a few nose sores lately. They started like a pimple and then ended up as just a flat red sore that hurt/burned. I told my DR they hurt and she wrote that down...I guess they are not supposed to hurt?

I wonder if these were truly used as a diagnostic criteria for me (I am second guessing my DX lately...sigh).

I have read that the true lupus ones are only on the roof of the mouth or the inner nose part on the septum??
[QUOTE=patience 50]I too have gotten nose and mouth sores for many years now. They always seem to be at the same places. In the mouth they are usually under my tongue or on the gum when the lower lip meets, that real soft tissue. The nose ones are really more painful to me. Would you all believe the Dr.s always told me I had an over acid system and should avoid all acid foods, orange juice, V8 juice, tomatoes, all citrus, U get the picture.

Now I know Dr.s are only human and can't know everything all the time but boy they really missed the mark for many years with me.

May God Bless You and All Those You Love
Patience 50[/QUOTE]
My Rheumy prescribed something called Kenalog for mouth ulcers. It does has a bit of cortisone in it but if they are really painful this does work.
From what I've researched... the "oral ulcers" in lupus have predilection for roof of mouth and along gum lines but can be anywhere in mouth... they are supposed to be different than canker sores or other oral sores in that I too have read they usally last at least 2-4 weeks or more... and they usually (not always) are painless and look like white filled blisters... another symptom that is very individualized... (me thinks... they might be painless til they pop and then start to heal...mine are anyway)

But I've not been able to find anything about "after" they break... when mine do that.. then... they become "ulcerated" looking with the hole and red inflammed, and sore. I've started checking my mouth for them and found that I do often have white blisters for some time (couple weeks or so) and they do not hurt until they "pop". when I went to the rheumy week + ago, I had just two I could show him and they were healing... but a really big one (about size of large pea) inside my lower teeth gumline has left an area that kinda like a scar of sorts ..but not white. Rheumy wrote down on the report "...two oral ulcers - healing.." I told rheumy I have gotten these things off & on for years but just attributed them to being canker sores.. but my daughter gets a lot of canker sores and they are most often on softer tissue like inside lips or outside gums and are not white blisters but darker red and are painful from the beginning ...

hmmm... I'm going to ask rheumy next time I see him for some of that zonegram stuff... (??? or shucks! not sure if I have right thing still in my fuddy brain..!) or whatever... last person said... thanks...=)

[I]ps --- hey guys for those of you who are old enuf to remmber... :p
"Blue... despair and agony on me. Deep dark depression, excessive misery. If it weren't for bad luck, I'd have no luck at all.... Blue... despair and agony on me..." [/I] :jester:
Donna---Hi.

I hope your mouth is improving. I forgot to mention that you may want to be careful also with your TOOTHPASTE and go to a brand for sensitive teeth, at least until you are back to normal.

As for foods and beverages, Patience mentioned citrus-y foods, etc. as bothering her mouth greatly. Same with me when I had oral sores. Plus chips, chewy & crusty bread, salty foods, etc.---all sorts of things. I was pretty famished there for awhile. :D

How are you doing now? Sending you my best, Vee
[QUOTE=Hewie]From what I've researched... the "oral ulcers" in lupus have predilection for roof of mouth and along gum lines but can be anywhere in mouth... they are supposed to be different than canker sores or other oral sores in that I too have read they usally last at least 2-4 weeks or more... and they usually (not always) are painless and look like white filled blisters... another symptom that is very individualized... (me thinks... they might be painless til they pop and then start to heal...mine are anyway)

[/I] :jester:[/QUOTE]

Hmmm,

I've had the type of mouth sores you described for a few years now. I mostly get them around my maxillary and mandibular gum line and they are painless. They last for a long time, sometimes a few months. They too are like little white blisters that eventually pop and then seem to later turn reddish around my gums and scar up a bit. I went to the dentist last year, she said she thought it was pemphigoid, but pemphigoid usually happens to people in their 60s and 70s and I'm only 32! Then another dentist looked in and wondered if I had something systemic going on...weird. I rarely get sores in my nose, but when I do, they hurt. I'll have to look into it more.

My ana was low...only 1:80 and I had a normal ds-DNA but on the high normal side, almost borderline. I'll probably have to wait around several more years before I get this cleared up to know what is really going on with me.
My ana was low...only 1:80 and I had a normal ds-DNA but on the high normal side, almost borderline. I'll probably have to wait around several more years before I get this cleared up to know what is really going on with me.>>>

I felt the same way, my first 2 ANA's were 1:80 also. Then one year later it went to 1:320 and then 2 months after that went to 1:640. Plus other things started showing up.... hang in there.





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