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.
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.
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.
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?
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!
Quiet I just sent you a PM that is hopefully helpful
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.
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
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!!
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.
Quote from: quietdynamics on May 06, 2014, 07:14:30 AM
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.
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.
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
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! ;D 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
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.
quietd: glad to hear you are feeling better and you will know if the ear clears, that it was related to the teeth infection also. Sorry I did not fully realize that the ENT had ruled out gland issues all together - I was still thinking in terms of the sublingual symptoms you were experiencing also.
Way back in the dark ages I think my first symptoms of sjogren's were teeth related and think there is a strong relationship to bacteria in teeth and sjogren's - which came first - the dry mouth - tmj/neuralgia/headaches or the toothaches - can't remember that far back but I suddenly had a lot of serious problems in my 30's but years before they found very high sjogren's SS-A SS-B.
Mistyrain,, finding an ENT was another 'golden prize' in the unexpected day.
My right ear is still painful. and we will meet to discuss possible Autoimmune Inner Ear Disease.
Proceed from there.
Saw on my cell phone Penn SjS Center did return my call.
Hope to connect with them tomorrow. :)
A process.
Jaw and site of extractions (2) are doing very well.
I consider myself very lucky.
Hoping for a bit of a lull now. Time to caught my breath and DH too.
With the high doses of anti-biotic the rashes and scaling on my forehead ( I cut bangs to cover it) are almost gone and smooth.. like old times.. :) make a note to tell Dr. and I did sleep most of yesterday.. not in SJS crash mode. Better sleep...lighter, and refreshing.
Maybe I will wear them back tomorrow.. ;)
quietdynamics: sounds like you are healing fast - all the best on all the next steps. :)
Wow, what an ordeal! So happy you found a great team of doctors. Hope you feel better really soon!
Hugs,
Maria
Thank you..
Crashed around noon and woke around 4pm.. hate wasting the day.
But, just could not keep my eyes open.
Now my to-do list is growing.
And I have had a right-side temple headache that I had hoped was stress/pain related and would go away .. still there. Darn.
Interestly, now that the swelling, infection, has been adressed.. I can feel how much my ear hurts in and of its own... so glad I have an ENT now.. lol.
Found myself yesterday revisiting in my mind some of the talks I had with prior Drs., Dentists, even Gyno, Endo about concerns.. things just not right..
Then stopped myself because I can't change that distance past.
It was long before every home had a computer.. library at our fingertips.
A more naive time.
So even though Drs. of the past not listening to me saddens me.
As with the spoon theory and physical energy, I try to be judicious with were I spend my emotional energy.
Sounds like you had a good day with some new info and relief of some tooth pain. Sjogrens is a slow revolution. I lost all my teeth eventually but had the dentists listened to me and pulled them much earlier I would have saved myself a lot of money, a lot of terrible infections and antibiotics and a lot of pain and misery. The best thing--hands down---I ever did for myself was get my teeth pulled.
The running around trying to take care of my teeth almost exhausted me. No one ever thought that I might have Sjogrens. When I look back I think---how could they not!!!!
I lost the hearing in my ear and learned to live with it---makes life a little more complicated. Best thing about it is sleeping on the good ear and not hearing any external noise when you sleep. Bad thing is---hubby passed away 3 weeks ago and he always woke me up cause I would never hear the alarm clock. Told the kids I would get a wind up Big Ben and hang it on the bed post and they would have to scrape me off the ceiling in the morning after it went off.
Above all, one must not give up fighting this battle. Life is short and even with lousy illnesses there are times when we enjoy life a lot and we have to learn to agonize and grit our teeth through all the brain fog and pain. Keep on with the fight, girl and you will not regret it. Irish
Thank you Irish,
It was due to your post and that of others that I had the clarity of mind to say to the Surgeon " I do no want an oral money pit.. am I a candidate for implants or not? In your opinion?" He said no.. due to bone loss.
So I will get the last dental x-rays.
Recently, I was just siting in the window flossing and do oral cleaning and "I' thought the lower bone looked different, less then,, tried to google images for comparison? Maybe anti-seizure meds at the dose I take? Need bone density test and those x rays for a valid comparison if there is one to be made. Tooth enamel looked striated, sometimes starting towards transparent? at edges .. bought ProEnamel. All that time without the proper saliva and all the protection it offers. Including the right balance of pro and con oral bacteria.
I was not going to revisit the past, but, perhaps it may alert a newcomer.
The Dentist where I went when my back two teeth broke was focused on doing what I considered necessary but secondary work after my express concern about receeding gums and two teeth that broke on a raw almond (folks they are not that hard).
I was single mom with two children just starting high school then, finishing up the year teaching in a juvenile facility and doing research towards my masters degree. After work I would get into the car and want to cry, as I did not think I could make it home ( a short drive) nor even stop to buy food on the way. That summer was the first time I did not do the summer equestrian program with children and crashed, only able to eat yogurt and bouncing off wall. I paid for the dental and actually never made it back .. just kept a temporary bridge.
When I finally go to a Rheum which I found by way of Special ED law, not the GP (who labled me overstressed single mom, take anti-depressants and see a therapist.. Thank the higher powers for that Law course!!)... and was told SJS .. I thought yeah.. pills / sicca.. I will be fine. They ruled out MS .. so relief. GP said "SJS you can have a full and normal life" yee.ha.
then dx changed to lupus/sjs... changed, changed , changed,
GP .. had sympathy for Lupus/ SJS... but, not SJS alone. Totally different attitude, demeanor.
When lupus was dropped.. I did not bother telling him.. lol. At that point I was only using his name for referrals anyway. Calling in and requesting them. Staff working the desk had been one of my students so I took advantage of the short 'visit'. Hear update on her college courses.
Vertigo, then Tinnitus in 2011.. pat on the head 'Sometimes it happens"
Gee .. say something original.
So the recent post on inner ear autoimmune caught me interest .. showed it to DH.. hmm prednisone
Mentioned this to second Dr. the ENT I saw on Monday. And will make appt to discuss with her now that she saw prolaspe in both ears and finally someone got wax out... jaw done.
Ear is aching, So more than likely not connected. No wonder I was falling apart trying to do all this estate stuff.
Without all this stuff.. I must be a force to be reckoned with...lol
As must we all.
Oh Irish.. 3 weeks. Early on I would often feel uncomfortable when people would say they were sorry for my lose of my mother.. and I was still in the period of relief that she was free from her disease.. I was just so focus that she was free. but, she was not a spouse, a husband, snuggle bunny.
"Told the kids I would get a wind up Big Ben and hang it on the bed post and they would have to scrape me off the ceiling in the morning after it went off."
**Tell the kids we want the video! lol
Remember how great and fresh and sparkly you would feel when you first dove into a pool... I want to feel alive like that, not weighted down by malaise, concerns, blindsided by the next symptoms and constant noise... just dive in to a clean pool refreshing pool and see the sparkle of the water drops and hear them only. Lie on my back, feel light and float, gently let the water play through my fingers.
So adjustments.. a hotel with a heated indoor pool , during the week, when it is likely empty. ;)
Maybe one day.
Maybe one day soon.
So I am beyond fighting this. There is no cure, I must make peace with this body, encourage it when it feels well and pamper it when it does not. Just as I would someone else. I am kind and less judgmental of my abilities now.
Each day stands on its own merrits and by my nature I look for the lessons so I can pass them on.
I am at the point of conservation.
Of each day, hour.. has the potential to give and/or receive a blessing.
For every effort and kindness I look people straight in their eyes and say "Thank you. I really appreciate what you did for me." Including each member of my family down to our 5 year old granddaughter. It is important to me that they know, that I know my illness is about them too.
Well, that went off on a tangent..
Quote from: quietdynamics on May 07, 2014, 03:47:48 AM
(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.
You know? I have always said this is why it's called "practicing medicine."
SO sorry to hear you are experiencing this pain! I wish you the best of luck and hope the Dr. appt. went well. I have been dealing with swollen parotid, submandibular and sub mental glands since February, 2013. First it was just the parotid. I had a "scope" surgery
(I can't remember the name or how to spell it) anyway there were no stones, no obstructions,and I was referred to Rheumy?I got a 2nd opinion, which led to a fine needle biopsy which showed nothing but it was not cancer. The meds I take for my AI disease does not help with the swollen and (red) salivary glands. Due to the Sjogrens, some of my glands have been destroyed and they no longer produce saliva. My parotid gland (which started this whole thing) seems to have resolved (for now) but my submandibular and sub mental glands are in a chronic state of pain, swelling, redness. My Rheumy prefers to IGNORE this part of my illness. I am still desperate for an ANSWER and a cure for the swelling, pain, and redness. Recently went to a dermatologist who is now treating the "rash" that covers the swollen salivary glands. Hoping I'll finally get some relief and ANSWERS. Please let me know how you made out at the Dr.'s and I wish you the best of luck with getting the treatment and relief you need and deserve.
"
KRNLMBCH
You are outside of Philly.. have you contacted the Sjogrens Center there, Penn Medical?
http://www.pennmedicine.org/providers/Results.aspx?lid=2886
An ENT would need to follow up on the glands. So happy it is not cancer. Last panel, treating Rheum tested for Leukemia .. negative.
Not sure if you Rheum is ignoring you, as gland would be outside scope of that field.
The Dr. who did the "scope" surgery.. did not follow up.. give you a referral with an ENT.
I had read re: dental, to get check up every 4 months? and perhaps the coating young children get for their teeth. Water pik, chew sugarfree gum with xylitol to promote saliva and clean teeth. Perhaps why despite all of this I have not have a lot of gumline cavities... go figure. Well I think I have two small ones now. Of course under the gums I cannot see? :o
Wonder if ph paper would help others.. or just make them neurotic? ???
I do use my toothbrush to massage my gums, insides of glands.. (I put my hand on outside of cheek and use brush inside to massage) and lastly my lips to clean skin cells and stimulate all of the above. Doesn't take much time before bed.
Feeling better.
Thinking the swelling was in sublingual gland and reading about, biospy, etc. All in all, not what I expected .. but, glands intact and I feel lucky. Thank you.