Tufts oral medicine

[Way2dry]

My dry mouth, eyes, nose (and everything else) have gotten so much worse over the last month or two.   I'm scared that my glands have been completely destroyed.  I thought that if I could get my mouth and/or eyes feeling better I wouldn't feel so miserable and depressed.

Has anyone with severe dry mouth been to the Tufts Oral Medicine Clinic?  Have they helped you?  On their web site they say they do a lot with Sjogrens.  Tufts also does research on Sjogrens. 

Any place on the East Coast for severe dry eyes?

Grasping at straws here...

(pilocarpine and evoxac stopped working for me - doesn't matter if it's generic or not)

[LadyDi]

Hi Way2dry, 

I was diagnosed with Sjogrens in 2012 by an ENT and Rheumy from Tufts Medical Center. I also went to Tufts School of Dental Oral Medicine Clinic, where a dentist who specializes in Sjogrens assisted in the diagnosis. She did an oral exam and a spit test, as well as reviewed my positive lab results.

I do not think that they treat any different than any other facility would. I was given a medication to kill oral yeast and also for Evoxac at the dental clinic. I was also given a prescription for Neutrasal to help remineralize my deteriorating teeth and to assist with healing the oral mucosa. The Plaquinel was prescribed by the rheumy.

My impression from reading everything on this forum and research on the disease is that they don't do anything different than anybody else. My local ophthalmologist prescribed Restasis for me and inserted permanent punctal plugs. I feel your pain with the dry eyes, as mine are getting worse despite all of my medications. I have big black circles under my eyes and sometimes I feel as if  I am going to go blind. My dry sinuses and dry eyes are my worst symptoms by far.

I'm sorry to hear that you are suffering the same. I'll be sure to let you know if anything new that offers any relief miracuously arises. Take care.

[Way2dry]

LadyDi -  Thank you so much for your response. You are right about other facilities treating the same as there is only so much they can do for us.   I don't think Tufts would be worth the 8 hour drive. I tried neutrasal for my dry mouth and it didn't do a thing for me,  but I think I'll use it to try to save my teeth.  I'm trying coq10 but it hasn't helped.  I'll try it a little longer.

Like you I have terrible dark circles under my eyes.  I was wondering if that could be from our dry sinuses. Maybe a sinus infection?  It's hard to tell since our bodies don't react to things normally.  I use saline spray almost constantly night and day, but it doesn't last long. 

I appreciate your keeping us posted if you find any new things that really work.  I'll do the same as I'm always looking.

Take care.
W2d

[annette2]

Eight hours is a really long drive. I heard Dr Pappas from Tufts speak at one the Sjogren's Conferences in Canada and I wrote about what she said. It's hard to do people justice in a blog post of course
http://bit.ly/1geOVrc

I keep wishing for a better solution. I have tried massaging my salivary glands as a few doctors have suggested. I take Salagen - likely I would take Evoxac instead but it is not sold in Canada. I tried it after I got a prescription filled last time I was in the US and liked it better.

I use saline spay when my sinuses feel really bad and it helps. Doesn't it just seem so wrong when you never drool, don't sweat much, and you can have a head cold and no one even knows? It takes a bomb (actually Mucinex) to loosen up all that "stuff"

Warm compresses used to help but all the care it takes to deal with this gets really tiring after years and years of never-ending care.

[LadyDi]

Yes, Dr. Pappas is the dentist who I saw at Tufts Dental. She could tell just by looking in my mouth that I had Sjogrens. She said that further tests were necessary (spit test for saliva, Schrimer for dry eyes, positive labs and a lip biopsy) to confirm my diagnosis. Everything came back positive, so her initial suspicion was correct.

Neutrasal isn't prescribed for dry mouth, but is however useful to help remineralize teeth that have damaged enamel and to help balance the PH of the mouth.

My sinuses have been terrible since I was a teenager, as I have very bad allergies and asthma. I also suffer from recurrent nasal polyps, which I have to have surgically removed. My black circles are a direct result of my poor sinus condition as confimed by ENT doctor. I use a facial sauna humidifier to help moisten my sinuses and I also use Nasacort spray to help keep things opened up. Many days I speak with a nasal voice, which some people find is fun to mimic. UGH...if they only knew the suffering! It really does get exhausting keeping up with all of the meds and the treatments.

[annette2]

It's awful that people imitate your voice in a way that is not nice.

Sinus pain is awful. The first time I went to the Sjogren's Conference I was given the task of demonstrating the NeilMed sinus irrigation bottle, which you use with buffered solution. I have never actually done that yet for real - it's my last resort. So far the spray has been enough for me.

I use MI paste to remineralize at night. One of the Drs said that if you use a night guard you have the sensation of a foreign body in your mouth, so that's helps to produce more moisture. I put the MI paste on my teeth under the night guard

In the afternoon if I have a nap I have dreams of being in a desert, and when I wake up my teeth are bone dry. That can't be healthy

Annette

[irish]

The most important thing to do for your sinuses is to irrigate them a couple of times a day with saline/soda. My ENT says that I should use a lot of water but I try to use just one cup each time.

I use either the Neti pot or the squirt container that comes with their nasal wash solution. I use 1/2 package each irrigation and often add a solution called Alkalol which one can buy at Walgreens. My ENT told me 15 years ago to use this and it helps to freshen your sinuses and loosen up that thick stuff. When you add some Alkalol to the salt/soda and do this often it keeps the mucus membranes cleaned off and helps to keep the infections down.

I have been messing around with nasal irrigations listed above plus my ENT puts me on antibiotic irrigations at times to help control infections. Right now I use Bactroban nasal irrigations a bout 3 days a week to help keep my sinuses more healthy. This changes from time to time. I have been dealing with large amount of thick mucus since 2000 and can't say that it has gotten qny better. At least I am not going through 10 boxes of Kleenex a week anymore. I used to have chronic skin burn under my nose and on my top lip. I looked like a little kid.

The mucus and hacking and choking is always worse at night and my sleep pattern is pretty well shot. I can only say that we do what we can and keep on trying to find things that will help. I have found that I sleep the best in a recliner so I at least get a few hours of sleep. I suck on Halls sugar free cough drops in the bags that you get 70 drops for about 3.50$ at Walmart. I have used these for years and they haven't killed me yet. I don't have any magic but know that the irrigations make for some relief. Good luck. Irish