1st time Salivary gland swelling questions, Calling Dr. in the am.

[quietdynamics]

Two days ago my mouth felt raw, including tongue, gums... felt as though even my teeth hurt.

Pre-Dx my dentist did not pick up on SJS even though my gums were receding and I had some teeth break. Just rattled off work he would do. It did not sit well with me as I felt there were underlying bacterial issues that should be address.

Then the neuro/fatigue issues hit big time.. so I was 'a wet rag' and useless.. trying to get help.

Saturday the jaw pain was intense and goes into the ear,  so I took 3 advils ( works for me, and even put some 5% lidocaine gel Rx on the jaw, then a neurotin. Now woke at 3:30 am and swelling in the subligual area has increase  from 4 fingers wide to a handful,including my right lip area... to bad it is not Halloween.

I am going to call the new Dr. (GP), I am her first and only SJS patient. And she has asked me about treatment protocols.

Can anyone tell me what their experience with this has been?
Bloodwork? 
Scan?
Anti-biotics ( I was already on liquid Amoxicilin) vs. prednisone.

[cccourt1942]

My telling symptom for 6 years.   More painful than childbirth when duct completely obstructed.   Sialdenenitis.   If warm compress does not decrease swelling you will have a bacterial infection  and need antibiotic.    Don't eat anything to make you salivate.    Will hurt more.   Antibiotic will start withi  two doses.   Good luck.

[DryGuy]

You might need steroids as well as antibiotics(if infection), a short course of steroids. I met someone the other day at a support group meeting who told me about how she ended up in the hospital with bad swelling under her jaw and they gave her antibiotics only and it did nothing. She spent 12 days there and the surgeon wanted to remove it and she knew better and kept demanding steroids. Eventually she got them, after 12 days and it went away.

[quietdynamics]

Thank you I have an appt at 1:30

cccourt1942.. great now I have a name "Sialdenenitis.' I did use warm compresses last night.
and
DryGuy.. yes, I was wondering about steroids.

Can anyone be more specific on treatment?
Name and dose of meds?

[4Kids]

When I had my big flare originally my face swelled up. Golf balls for parotids, and probably the same in my neck. They gave me dexamethasone first then quit, and it came back huge and then a prednisone course, then finally the eye dr put me on the dex eye drops which helps but didn't stop it. I had that course for a month. My submandibulars are still larger than they should be, grape sized I guess.

Mine were infected, and I had a sour taste in my mouth often. I had a liquid antibiotic called supra? or something because most were not working.

I hope it gets better soon!

[DryGuy]

Quiet I just sent you a PM that is hopefully helpful

[quietdynamics]

Thank you..
Put the info on a summary sheet I will take to the Dr.

And made an online request for an appt with Penn Sjogrens Clinic.. which I was putting off due to other things taking up so much of my time.

The upper part of my mouth feels like it is raw.My ear aches. And I want to crawl into a dark cave.
Better get ready for the Dr.

[finallyadx]

So sorry to hear this - it is so painful and frustrating. 

I have had a few infections involving the glands and then most recently went to my rheumy and asked for evocax ?spelling?...to try to help with the glands.

Hope you have an answer and some relief soon with some medication.  Keep us posted.

Kim

[cccourt1942]

Quiet and DG:  re: Medrol pac (steroids) for sialadenitis:  I have forgotten (since I stopped having them about 1 1/2 years ago)...whenever I went to my GP if I couldn't see the otolaryngologist...she always gave me the Medrol pack.  Thinking back it was more for either bulging eardrum or sinus inflammation...and once or twice because I was getting on a plane for somewhere.  So I guess I did have the Medrol say maybe 50% of the time.  Thx for helping quiet, DG.  Man...if you guys haven't had this torturous condition, you can't imagine the pain.  And...can't eat.  EVERYTHING makes you (TRY TO) salivate but for broth and water!!

[quietdynamics]

Thank you for your help and support.

Left here at around 11:30 and got home around 7:30

New GP examined me and called to get me in to see an ENT asap. GP said she is not on call that night but, to call her with any problems anyway.
The GP shared she got another Sjogrens patient, Dx'd by a Rheum, a 5 year old girl.
I am so incredibly saddened by this.

Saw the ENT and she determined the swelling and inflammation was dental.
She in turn got on the phone and got me in with an Oral Surgeon, right across the hall for Xray, etc.
While I had her attention, I did talk to her about the Tinnitus and hearing loss. And the post/information recently in a thread here about the prednisone course .. so we will get together soon.
She did clean right ear of wax and now  have prolapse in both ears.

Go across the hall.
X ray showed infection and bone loss, periodontal disease. ( Gee.. sarcasm)
I had complained about gums to other dentists.. told to use peroxide and baking soda.. sometimes these things happen? I even made a peroxide/baking soda paste and put it on dental floss. Pre-Dx.  Disturbing at the very least.. could this have been managed? 
Next dentist was doing a timeline of caps.. I said what about my gums?
Then I crashed into the nuero wall and all bets were off anyway...

From research on what saliva does to protect teeth, oral health and digestion.. after Dx and things spiraled down. I realized the prior dentists were wrong and should have been attentive and aggressive.

I could see the enamel was thinning. Read later that change in tooth color can indicate thinning.. So many learning curves.

Surgeon right there and then did  two extractions. One back tooth that broke on a raw almond and the one next to it.
Again reading here about others experiences.
I asked him about the overall view given the disease state and bone condition.
So most likely dentures on the very near horizon.
With the thinning of enamel, I was going to find a dentist and ask about veneers for protection, get bone density test.
Cut to the chase and just asked him if other other than dentures would my mouth be a money pit.
That is how it looks.
So next hill to climb..

I will ask the Dr. to send me a 'laymans terms' summary of exam/appt.. because the pain was intense, I was exhausted and I was zoning in and out. They had to wait a bit for my blood pressure to come down before they could proceed.

Tech was great gave me the name of the dentist she uses and the name of the insurance plan (supplemental ) she bought.

Thanks to the new GP  and her staff, so much got done as compared to prior ones.
Felt like one stop medical care.. so in that manner was extraordinary.

Found her all because she was covering for a prior GP ( who barely looked at my 'blue feet" in the summertime).
A very productive and efficient day.

So that is the reality and I am so grateful for the medical team that came together yesterday and helped me.

[cccourt1942]

The GP shared she got another Sjogrens patient, Dx'd by a Rheum, a 5 year old girl.
I am so incredibly saddened by this.

Is this the youngest any of us have heard about?  Bless her baby heart!  (and parents)

From research on what saliva does to protect teeth, oral health and digestion.. after Dx and things spiraled down. I realized the prior dentists were wrong and should have been attentive and aggressive.

This is what my dentist friend told me (practices in another town--does not treat me)  She says with the veneers, bacteria can still form in any little pockets not covered...leaving BAD bacteria (isn't it all bad?)  But my teeth discoloration over a few short years should have been a clue to a dentist.  Wasn't My friend dentist says to do implants is  a gamble not knowing if your jaw will stay strong.  She says unfortunately the dentures are not only the most cost efficient but choice for sjoggies. 

So many learning curves.

amen

With the thinning of enamel, I was going to find a dentist and ask about veneers for protection, get bone density test.

Yes, yes.  We just depend on doctors/dentists and don't always observe.  Heavy sigh.



A very productive and efficient day.

Sounds like it....wow...very tiring.  SO happy you have proper dx and treatment.  Rest.

[Jasper]

I am really sorry you are having to deal with all of this. However, it sounds like you have a gem for a GP. (I need to find a GP like that, LOL.) It is encouraging to know that there are still excellent, competent, and caring GPs around and it is wonderful that your GP investigated and followed through on your treatment. That is the way medical care should work.

I know you had an exhausting day and were hit with some brutal realities, but it is good that you are now under the care of competent doctors and will get the care you need.

This is also a good reminder to the rest of us to keep a sharp look out for any and all mouth, gum, dental, and jaw problems and try our best to prevent them. It is also a good reminder to us that many/most dentists just don't know enough about Sjogren's to recognize when our mouths and teeth are falling apart.

Wishing you the best.

[Ripvanann]

Wow QD, you have really been through it these past few days. I am so sorry. I'm here re: the dentures to talk about it. I'm just so glad that they found it all and took care of you right away. I'm surprised thatoyou didn't end up in the E.R. before your appt. today! Can't believe you made it to the GP, but  relieved to know that you did.

Praying for you.

Grace and peace,

~Andrea

[mistyrain]

quietdynamics: What trauma you have been dealing with.  I can't imagine Sialdenenitis, ear pain and then having tooth extractions - hopefully you will feel much better soon as you heal.

A couple of times I had sialadenitis very badly and could not get to ER - later, the rheumatologist said I probably had a submandibular stone.  I could feel it cutting a blood vessel but never did see it.  Certainly one of the most painful episodes in my life - (and I have had a few!).

You must have had bad infections that the oral surgeon removed two teeth there and then.  How terrific that the GP and oral surgeon (and technician) worked together to get you the right kind of help so fast.

you said "I had complained about gums to other dentists.. told to use peroxide and baking soda.. sometimes these things happen? I even made a peroxide/baking soda paste and put it on dental floss. Pre-Dx.  Disturbing at the very least.. could this have been managed?"

and

"Next dentist was doing a timeline of caps.. I said what about my gums?

Then I crashed into the nuero wall and all bets were off anyway"

I had similar experiences but based on being unable to attend a dentist for a long time while dealing with serious heart problems.  Fortunately I did find a dentist who has gone a long way to help (keep in mind I am 77 yrs old).

The first thing this dentist did was to order a deep cleaning.  It took four appointments to have the hygienist provide a real workout on cleaning each tooth down to the bone - actually, not as terrifying as it sounds.  In fact, they did offer a shot each time but also said they had a way of deadening the pain by using a small capsule around the gum lines that help numb the nerves and that worked just fine without the shot.

This was the first deep cleaning I had ever had and it was amazing.  In actual fact after the third appointment I had a bad systemic inflammatory reaction (a generalized miserable flare is how I would describe it) but I recovered and continued on and then the dentist was able to truly examine my teeth and proceed on with dental work.

The initial dental work is almost complete but they are taking a conservative approach and whether I will experience some more future work is something I have to deal with.  But at least I still have teeth!   And my mouth feels so much better after those deep cleanings - even some increased saliva.   I have also been researching different types of oral rinses in the hopes that things might improve.

My personal experience is that there could be a strong relationship to teeth infections and sjogren's and also to inflammation and heart.

I sure hope you will feel much better soon and continue on with a good dentist who may consider dental deep cleaning as most important to general health and wellbeing.

cheers
Edith

[quietdynamics]

mistyrain,, gland issues were ruled out by the ENT.

So a different roller coaster ride. But, as I shared with everyone the medical folks were really quick.
Just amazing compared to past experiences with other things. They rocked.

Feeling much better today.
Going to try not to take percocet today, really knocks me out. lay down to read a book and find myself creating the storyline  .. Now I am really behind on things I need to take care of.

My right ear still aches to point where it is bothersome.. so probably switch to Advil.
Was surprised GP said I could take up to 4. Not as a daily thing. (actually I could not find the container of them.. somewhere.. so we had to pick some up).

Oral Surgeon also gave me a Rx for a mouth rinse Chlorhexidine Gluconate 0.12% Oral...could have been why my mouth felt on fire. I was even cleaning my tooth brush in the microwave.

(Don't you wish sometimes getting old records and finding things overlooked could at least be the basis for a Dr. complaint. ) Anyway, I think I should pick up the other Dentist xrays for at least a comparison as to measure of bone lose.