Sjogrens and the Parotid Gland

[kaytwo]

Hi all,

I'm new to the forums and new to Sjogrens.  My doc diagnosed me about a month ago and mentioned that I might also have lupus, although he does not want to make that diagnosis yet.  Recently, as I've been learning a little more about Sjogrens, I came across some information indicating that people can sometimes have discomfort in one or both of their parotid glands. 

I have had terrible TMJ on my right side for sometime and the parotid gland on that side is frequently achy and uncomfortable.  Does anyone else have these two symptoms occuring together and how many out there have the issue with the parotid gland?

Thanks for your thoughts and input.

Kaytwo

[Pisces24]

Before I got officially diagnosed with Sjogrens, I had about three times where my partroid gland swelled.
Once it took three rounds of antibiotics to "cure" it and if that didn't work the ENT dr suggested flushing it. I guess you can get something stuck in the gland that makes it all "back up".   The time I had it bad it looked like I tried to swallow a tennis ball and it got stuck under my left ear. It is almost like you got a big bag of water under the skin there. I had been told to massage it and use warm moist heat but that never did a thing for me.

Not surprised it seems to effect you in the jaw part. Me when I am about to get a sinus infection os something similiar, I feel it in my gums.  They get extra dry, sore and achey.

BTW: When I did finally get diagnosed with SJS, what gave the immunologist the idea to test for it was: numberous teeth cavities, dry mouth, dry eyes, numerous sinus and throat infections and "in the past 3 years" three bouts with partroid gland swelling.  I honestly think my mentioning the partroid gland swelling gave him an "aha' moment to test for Sjogrens. I wouldn't be surprised if that is possibly a normal occurence with SJS.

[Kerrikins]

I don't have tmj but my left parotid bothers me almost constantly. I put up with this pain for months, as I had complained in the past and the Dr offered no help. Finally I couldn't take it anymore and went ahead and got seen again a week or so ago. The Dr termed it mild parotiditis and gave me a 6 day steroid course but the pain only went away on days 2-3, it came right back as the dose tapered and now it's just like it was before. I guess I just have to live with it now. I get sharp pains in it and also a feeling of pain and pressure near the back roof of my mouth and behind my teeth. In addition to it occurring randomly, I'm guaranteed to get the pain and pressure anytime I lean forward. In front of my ear there's some swelling but it isnt obvious. It's depressing to think that I might have to deal with this daily for the rest of my life. if anyone has found a med that helps this issue I'd love to know. Plaquenil and prednisone aren't helping me, or maybe they are and it would be a lot worse without it. Who knows! Either way it stinks.

[kaytwo]

Thanks for responding Pisces.  It helps me to figure out whether or not I should mention this to my Rheumatologist.

[kaytwo]

Hi Kerrikins - sorry to hear that you have had this for so long and no relief to date.  As I was reading your post, I wondered if any of this parotid gland swelling or pain could be associated with lymphoma or some other tumor type of thing.  Not trying to alarm anyone, but this just crossed my mind.

[Kerrikins]

Geez I really hope not! My bloodwork hasn't been out of the ordinary and I'm not having any night sweats or other lymphoma symptoms, so hopefully it's a sjogrens thing. I wish there was something to be done about it though. I'm wondering if methotrexate would help any. I've noticed my joint pain isn't under control lately either. I guess I'll ask at my next appointment, or sooner if I can't take it anymore again.

[Tempez]

I haven't been officially diagnosed with Sjogrens, but have had the parotid swelling for almost a year.  It would at first, come and go.  But they are swollen every day, somedays worse than others.  I have had a CT, but nothing showed.  I am going to my Primary care doctor this coming week and was thinking of asking him to see an Immunologist.  The swellig is so noticeable that my 10 year old daughter told me, "mommy, your face isn't as puffy today as it was yesterday, you must be feeling a bit better."  I look like I have the mumps, and when I am feeling really bad, the swelling can go as far as my chin.  Wish you the best of luck.

[Rose G]

My paroitids act a little different.  I have extreme pain all under my chin and face, behind my ears and on my face in front of my ears.  I went to an ENT for the ringing in my ears (which he did nothing for) and mentioned this pain.  He felt all around and said "they are not swollen at all.  They just feel that way to you because they are inflammed by the SS)  You need to see you rheumy for that.  Duh....thanks for nothing.  I have been on 2  "wean down" does of prednisone along with plaquenil, that have not helped at all.  Almost done the pred and will continue with the plaq which is starting week 7.  I am starting to think I will just have to live with that.  No pain meds touch it and some other "odd" pains I have.  I wonder if self-hypnosis or meditation or something could help.  It is a real pain for sure!

[Redetha1]

I also have problems with my glands swelling.  The ENT (ear, nose, throat) doctor diagnosed my SJS thru a lip biopsy.  I have also had four stones in one of my parotid glands.  One I passed and the other three had to removed in surgery.   Who would think of stones in a parotid gland.  The parotid glands swell and I continue to massage them.  I also use hot compresses.  It has kept me out of pain for the most part.  My ENT doctor is wonderful.  I can see him almost immediately if needed. I think I am more fortunate than most in that area.    I also see a Rheumie.  He is kind of straight forward (post-military) and not much of a personality but he makes sure he checks all areas so I can tolerate the personality because he does answer all my questions.    Good luck to you.  Keep looking until you find the right doctor for your personality.  That is what I have done. Works for me.   

[bigb00]

I get pain here a lot. I didn't know why until I read some more literature on Sjs... and then I was like oh nevermind..

[kaytwo]

Thanks to all for sharing your experiences.  Guess I've got to find an ENT now, in addition to the Rheumy.  I'll also try the warm compresses and massage.

[Meld256]

Hi kaytwo,

First, I want to welcome you to the forum!    I think you'll find lots of great information here.

In regard to your question: I don't have TMJ problems, but have had lots of off-and-on again swelling of my partoid glands. (I'm also fairly new to Sjogren's, too)  Last Sept. I mentioned to my rhuematologist how my jaw on the left side was very sore and swollen. He ordered an ultrasound and then a CT of the area.

 I thought it seemed a bit overboard, but I'm glad I got some answers. The CT showed quite a bit of infection, and the radiologist had written on the report that this most likely would be caused either from early HIV infection or Sjogren's. I had a negative HIV test, so this was a bit more proof of the Sjogren's.

Feel free to ask anything at all. We are here to help one another. Looking forward to hearing more from you!
Take care,
Melinda

[dainbramage]

I just saw my ENT yesterday. My lymphnodes are swollen, but he says they are not overly swollen. So I have to see him every 6 months. I told him about chewing and after a while my jaw hurts. He thinks TMJ, but he says I am not making enough saliva even with salegen. (the other drug did not help) My tear ducts swell more than anything and my right parotid swells. I guess we have to live with this.