Parotid "flare"

[cccourt1942]

I had this curse for about five years before I really knew what was causing it.  Since dx (going on 3 years ago) I have had the stopped up parotids about 4 or 5 times.  It's been a great relief.  I don't have a clue as to whether the pilocarpine is why I stopped suffering so frequently. 

I have been told all but my right parotid have atrophied.  Well...this time it is in my left parotid.  I have noticed some "movement" (translated painful pangs while saliva was trying to get thru the ducts) on that side for a number of months.  I thought it was a good sign.  Apparently not.  This is my second full day (and on antibiotic) of this.  The swelling hardened so quick and fast after the swelling it startled me.  I was able to do massage after a few hours...but today, it has hurt too badly.  If this is really a flare of Sjogren's (as opposed to sialadenitis) should I increase my prednisone till it starts going down.  I am taking 3mg prednisone per day as it is.  I can't eat during this as any salivation takes me to my knees.  So water it is.  Argh.   What a week end!
c3

[Tharrell]

Oh my goodness! That sounds excruciatingly painful! I get the occasional pang of pain that drops me to my knees when I have a burst of saliva. I can not imagine what you feel right now!
Steroids take down inflammation quiet quickly. I'm on 5 mg daily long term. So doing a short burst of it might help take that down.

[irish]

I think that's a question to ask your doctor. Steroids can increase the chance of infections so knowing that you have an infection makes one wonder about the wisdom of taking more of them. You are on antibiotics so I would think that some mild heat would help to loosen things up some.

I get this in my submaxillary glands off and on. I call it the chunkies as the mucus is so thick and painful when it pops out of the ducts. I think our bodies all react differently to these infections in our ducts and we have to figure out each time it happens how to deal with it.

For sure that pain is something that no one can understand unless they have suffered with it. I hope that you get relief soon. Have you taken some Tylenol for the pain?? Sometimes this helps some also. Good luck. Irish

[warmwaters]

Good point made that steroids can increase risk of infection.....

I go through this, and in addition to antibiotics, I use warm compresses to soften the area, then massage it. You can also use lemon to stimulate saliva, but to me, that just hurts.

You can also try generic mucinex as a preventative.

[gurs]

Lemon actually makes my parotid glands the worse..anything super sour like that really bothers them. Guess we are all different? I had a stone blocking mine once, but it dissolved thank goodness.

Hope your feeling better soon.

Gursie

[cccourt1942]

Okay--day 3 and it has subsided.  Still swollen, not as hard.  At least I can do massage now.  btw: I do apply heat...but when it gets this bad, it's like sending coals to Newcastle.  Just been a long time since I had one this bad.  I can't believe I once went two and three days without eating anything frequently...sometimes once a week. 

As Gurs stated, lemon can be the worst.  In fact, anything citrus in any form.  My GP told me to force the saliva thru by sucking on lemon drops.  (This was during the years I was dxed with sialadenitis and not SjS).  I ordered  a BOX of lemon drops.  Kept them in the fridge.  They do nothing.  If your glands are functional, they are a candy.  Saliva is flowing with or without.  Well...when they are stopped up?  The lemon drop is painful.  Anything which makes you salivate freely will do this.  I once had an attack when a Margarita was just set in front of me.  It was the first time my daughter ever saw my parotid gland "grow" instantaneously.  Someone said heat packs.  I do this at each hint.  I have had this hit in restaurants and asked for a moistened table napkin to be placed in a plastic bag, heated and brought to me.  I have never been refused. 

Okay---I didn't increase my LDP.  I took my antibiotic 24/7 @ 6 hour intervals.  Did not do that on day one.  Just during waking hours.  I am still amazed my cheek remains swollen and tender.   Am getting ready to take a trip and hope this does not rear its head during that week.  Well...for that matter, hope nothing rears its head.  Most scared of costochondritis flare.  I do have my prednisone emergency prescription for a prednisone burst for that tho.  Now I need another Rx for salivary gland flare.  I am beginning to forget how easy travel was before this condition.  Pack, play, home. 

Thx for help SjS girls and boys,
c3

[irish]

You sound like you have a problem with swelling that is affecting the ducts. When the ducts are really swollen and then the glands kick out the thick mucus the spasms start in the ducts. They can't move the thick saliva through those tiny ducts. Then when there are some salivary stones or gravel in the way it gets worse.

You might benefit from doing the heat and slight massage on a daily basis. Also, I am wondering if you have every taken Ibuprofen or Aleve on a daily basis. This could help with the inflammation that you are suffering from.

It might even help for you to have a short burst and taper of Prednisone to help calm down inflammatory issues in your ducts. You would probably benefit by having an Ear Nose and Throat doctor to help you with the ins and outs of these symptoms. It doesn't make any difference if you have a diagnosis cause you really need a doctor who will treat your symptoms.

I had my worst oral symptoms for about 20 years before I got my diagnosis of Sjogrens. I had so much going on and had no clue what the problem was and I lived with my rice bag on my face, neck and over my nose. My nose and sinuses hurt so much and the rice bag kept me sane. Good luck as you go down this path.We all have so many different ways that we are affected but yet so much alike. Irish