Mouth swelling

[LauriceM]

Hi! I am newly diagnosed with Sjs. Does any one else have problems with their lips, tongue, and inside of mouth swelling? I am wondering if this is a Sjogren's thing or if I could be from Evoxac  or xylitol.

[sixty]

I have problems with my mouth also.  I believe my mouth swells because I will often bite the inside of my lips as I'm chewing.  It happens to me often enough that I notice it, maybe once each month.  Sometimes I really injure my mouth by biting and it seems to affect my left side more often if that has anything to do with it.  I wish I could do something about it.  Whenever I mention it to Drs. they appear confused and have been no help at all.  I have no idea if it's Sjogrens but I believe it could be.

[LauriceM]

Thank you. My doctor didn't say anything about it. I am having problems with my speech. It's not always easy to talk when your lips are swollen. She wanted me to get a neuro consult before putting me on prednisone. Go back to the neurologist in two weeks. Don't  go back to rheumy until April. Needless to say I am really stressed.

[irish]

Have you tried taking benedryl or Zyrtec to see if the swelling went away. Sounds like it is affecting mucus membranes only. Possibly related to histamine release etc. It would be good to see if you can find what is going on before you go on the prednisone. Prednisone can get rid of a lot of symptoms but then we don't know what the cause was if not diagnosed prior to the prednisone. Good luck. Irish

[Sharon]

I get swollen salivary glands and lips whenever I get a rush of saliva from chewing food.
It disappears/drains a short while after.
No specialist has been able to explain it.

If you suspect Evoxac or xylitol try stopping them for a few days and see if your symptoms persist.

[cccourt1942]

I don't know. But, I can tell you I have it too.

Mine was worse prior to my dx and treatment w' pilocarpine.  I "thought" it was because of parotids and lower lip salivary glands were clogged up and swollen with sludgy mucous.  I don't know.  I hear this asked frequently. 

Before my dx the only person to ever notice was my dentist.  The would note the type of "wound" (not kidding) they considered on the inside of my mouth. 

After dx, (and meds) I have had less problem from my parotid proximity...but wow my lower lip.  I would guess I do it (chew my lip) about ever month to six weeks.  I'll do it several days in a row.  Then I think I am very careful...or eat soup/soft foods so as not to hit it again...and it eventually heals.  Then the countdown starts again. 

?Xylitol?  I don't know what this means. Xylitol is a type of sweetener.  I wonder if you are calling a gum sweetened with Xylitol  "xylitol" as opposed to gum. 

Best to you...and really..after dx...and I figured it out...overall I think I've become more careful!

c3