Also, any recommended books I can read?

Thanks!

HI, I found out I had sjogren's because of my salivary gland I'm not sure ifit was the parotid gland though. I had a salivary gland and a lymph node removed about 12 years ago because they were enlarged and hurt like hell. I still have enlarged lymph nodes but I also am hypothyroid so it might be from that too. If I were you I would follow up with a Rheumatalogist they have more experience with this disease and might be able to give you more in site. There is a sjogrens syndrome foundation you could also contact, sorry but I don't have an address but I'm sure if you google it you'll find more info. Hope I;ve been a little help.

Pattyn

Yep, swollen salivary glands are indeed a sign of SS....white blood cells infiltrate the moisture producing glands of your body causing them to swell, and eventually the moisture glands are killed off. Salagen (a med which helps with saliva production) is very helpful for me, but it can't totally alleviate my seriously dry mouth. I take 2.5 mgs of salagen every 1-2 hours...however, at night (or when you forget your pills), you're out of luck. Your mouth will be very dry and most people have problems with cavities because of it, so there is some "getting used to it" to be done. But if there was only one drug I could take for all my illnesses, I'd say salagen is the most important...without it I can't eat, speak, or swallow. It has been a saving grace for me. Good luck to you...

Sandyclause,

Read through this forum loads of information posted on dry mouth and solutions. YES, they are the parotid glands and I've never heard of people having them removed , but I guess its possible.
The supply saliva which has a bacteria in it the protects your teeth as mentioned. Biotene makes special products that help like gum, mouth spray, toothpaste etc
Salagen and Evoxac.....both work but have side effects so read up on them in your case. Your doctor might prescribe Plaquenil too if you have joint pain and fatigue or TMJ-TMD pain.

Sjogrens Foundation is the BEST place for up to date information. You might want to join moisture seekers they send you a monthly newsletter on new remedies and new techniques and every else related to SjS.
http://www.sjogrens.org/ssfstore?page=shop.browse&category_id=3&vmcchk=1

If you join its much cheaper. Better yet a rheumy can get it free and let you read them on visits. :-)

Good luck read through the posts here and welcome!

Hello, I too have the swelling in my parotid glands. To get relief, I apply moist heat to the area ( magic bag), it feel good and the swelling dissipates rather quickly. I was just given my Dx. 3 days ago, and it helps to know what I'm dealing with. I also have had an ulcer to my Rt. cornea...now that was painful. It felt like glass in my eye. It was caught early so no permanent damage. It come from the constant dryness of the eyes. I hope the moist heat works as well for others :)

Thanks for your replies everyone! I do take Plaquenil and the ent started me on Salagen. My rheumy didn't seem to be too concerned about the swelling and didn't think I needed to see the ent. She also didn't seem to have any helpful ideas about the dryness. I told her I had tried Bioten and she never heard of it. It does help to use heat. I was, um, hoping this wasn't a permanent thing. Oh, well. I'll add it to the list, lol.

Thanks again!

Hi - I had a HUGE gland swelling on my honeymoon! Sucked - but I'm so so glad that it waited until after the wedding day!

I've learned that if I feel the swelling start I can take ibuprofen (advil) - and I take lots of it - then I can get the swelling under control before it gets to the chipmunk stage. I also use ice packs to reduce the swelling.

Am I understanding you right when you say your rheumy doesn't have any suggestions for dryness and never heard of biotene? I think it's time for a new rheumy.

Go for a new Rheumatologist...if your current one can't suggest simple solutions for the dryness you need to seek another professional!

No one (except us sjogrens folk) knows how painful the swollen glands can be. When mine would swell just walking into the kitchen while Mom was cooking would crank up the pain. Of course, the scents trigger saliva glands- and bam!
Something that has worked for me is massaging the gland. It hurts like hell but if you do it gently you might even feel it release a little.
Also biting on a slice of lemon.
Sorry that you're hurting. My siblings used to make fun of me until now. I did a lot of suffering until getting the correct diagnosis just a year ago.

I also heard from a friend that using a hot compress while gently massaging the glands helps. She does it every night after washing her face, using the hot wash rag. She does this whether the glands are swollen or not and says she has had few problems since starting it. She was diagnosed in 1986, so she has had years of experience!

I have an asymmetrical face--my right parotid gland swells up off & on. (it is really bugging me tonight)

Hot compresses and some sort of anti-inflammatory med like Ibuprofen can help. I take tylenol for the pain since I am already on Celebrex and can't add another anti-inflammatory on top of it.

I really am surprised that your R-doc did not know what Biotene is! Find a doctor that you don't have to educate!!! Sometimes, I find great satisfaction in letting a doctor go. I hope you have some better options.