Swollen tongue

[Kris29]

I've seen some posts about this but didn't see any firm theories. Has anyone who posted about it in the past figured it out?

Right now one side of my tongue is a little sore and swollen. I had this last year, and it got progressively worse before getting better. I even went to the ER when it got worse suddenly one day because...well, tongue swelling is scary! They reassured me that it wasn't an allergic reaction and that they didn't think it was going to progress to the point that it blocked off my airway since it was primarily on one side.

But it's annoying and makes me sound like I'm mumbling all the time unless I'm really, really careful. I am having a bit of a flare-up overall (postpartum), and I'm pretty convinced it's related to Sjogren's. This is the second time with the tongue swelling since I started with Sjogren's symptoms and was diagnosed, and I never had it before that. Any tips on making it go away? Doctors didn't have any info last time it happened. And I'm between general practitioners at the moment anyway.

Thank you!

[cccourt1942]

Kris,    I noticed you haven't had any replies.  I am one of the few in this forum who suffered from Burning Tongue....it's subsided now.  The thing is, I don't recall my tongue being swollen.  On the other hand, I DO recall biting the back sides of my tongue for a period of time as well as the insides of my cheeks.  I had probably had the burning tongue at least 2 years before I noticed the aggravation of biting the inside of my mouth.  Unfortunately, I can't recall the progression of improvement exactly.  I will tell you what I did...while I urge you to remember I'm talking about burning tongue and NOT swollen tongue period. 

I had this over 3 years before I was diagnosed.  With the diagnosis, I still didn't have any dr who could explain what it was.  There are but a few on this board, which I've already said, who have asked/discussed.  My improvement started with calming the burning in the beginning.  I used a product called OraSoothe.  You can get it at OraSoothe headquarters, located in Grand Prairie TX or at Amazon.  Remember...I realize you did not complain about burning.  Just giving you my steps.  This product will calm the tongue but not cure it. About a year after I started the treatments (pilocarpine, etc) for SjS, my Rheumy started me on 5 mg Low Dose Prednisone (LDP) for a year. Then I was reduced to 2 - 3 mg per day.  Sometime in that first year on LDP, my tongue not only healed, but I stopped biting the tongue and cheeks.  Oh...my lower lip WOULD feel swollen, and I did bite it frequently during all this time.  In fact, it's the only part of my mouth I bite anymore...and probably no more than twice during a year. 

Your tongue hurts, mine did...but not like you are describing.  Almost anything I ate I couldn't tolerate on my tongue.  I lost at least 30 #s over that time...then I started on puddings, yogurts, ice cream...so stopped the weight loss.  Ate lots of soups.  As stated..still hurt so badly. 

I have met a woman in my local SjS group who is treated for ALL her SjS symptoms by an Endodontist.  We can only presume it is because she was already Lupus, and her rheumy couldn't dx her thru blood tests...but he dxed her on symptoms.  First time I've run across this paradigm.  I'm telling you this because an "oral specialist" which I have never consulted...or even seen (differentiated from ENT or and/or Dentist) might be able to help you. 

I believe the prednisone decreased the inflammation (in my tongue) from SjS and that i'd had it so long, my tongue felt normal that size.  Just sayin' trying to make something ring a bell with you.  Good news is if it's swollen, plaquenil and LDP will help with the inflammation.  IF that is what is causing it.

There's a chance none of this fits you...but having had oral aggravations, I KNOW how uncomfortable and aggravating it is.  I barely remember that period...unless someone like you comes along and asks a question.

Have a good weekend,
ccc

[Kris29]

Thanks for your response. Your reply reminded me that I did end up going on Prednisone last year for a short time because my GP didn't want it getting any worse, and that either helped or it wasn't going to get any worse anyway. I'll do that again, I guess, if it doesn't improve. And if this continues to recur, I think that product you mentioned would definitely be worth a try even though we're talking about different tongue problems! I'm not on any medications for the SjS except for eye drops.

My rheumy says that I'll probably have to be on them eventually, but that I can wait as long as my symptoms are manageable and my inflammation markers stay low. I'm actually curious as to others recommendations and will post a separate thread. It will be interesting to see if my random tongue swelling goes away after I start meds. And I do bite my tongue all the time! I didn't think to connect that to low-level swelling.