Part 2 Immune System Gone Wild. Sjogren's National Conference Dr. Papas

Dr Athena Papas was an outstanding speaker at the National Sjogrens Conference. She is the Head of the Division of Oral Medicine and Public Health Research at Tufts University School of Dental Medicine in Boston. Her talk was full of useful and practical information for people with Sjogren's Syndrome.

On one of her first slides we heard that a lack of saliva can also cause trouble speaking and swallowing. We also learned that it occurs in a 9:1 ratio of women:men. This means it can take even longer for men to be diagnosed.  

                                    

                                                      9 out of 10 with Sjogren's are women
As saliva in the mouth goes down the decay and erosion goes up.  She suggested the use of fluoride to help stall decay. If your gums recede then you will be more prone to root decay.  Acidic drinks and juices may cause rapid erosion quickly. The best drinks are milk and water according to a chart presented that detailed the acidity (pH) of common drinks.

Dr Papas mentioned sialoliths or salivary "stones"  which can cause pseudomonas infection of salivary glands and showed a slide of a patient with lichen planus in the mouth.  She commented that lichen planus can get away on you fast make sure you have it seen. If you have candida yogurt may help.

Acid reflux is a common complaint and it needs to be controlled to protect the teeth from thinning. If your amalgam fillings are really shiny it may be that the acid from reflux is polishing them.

                                        smilesbypayet.com                                       

Psych meds in general are the most drying group of medications. Lyrica is one of the most drying, as is Prozac.  

Dr Papas was the principal investigator on the dose escalation of Salagen. She says cytokines block salivary secretion. Salagen makes those glands that still produce saliva work harder. She also demonstrated a method of massaging the salivary glands to stimulate them.

She suggested getting fluoride varnish every 3 months from the dentist for tooth protection and the use of prescription fluoride toothpaste that can reharden the tooth surface. MI Paste contains ACP (calcium phosphate) and is good, as is Caphosol. 

Dr Papas made comments about the benefits of implants for people with Sjogren's.

Near the end of the talk Dr Papas presented a slide summarizing treatments:
Use a sialogogue (salivary substitute)
Use prescription strength fluoride
Use lubrication
Use calcium and phosphate rinses
Use MI paste
Stimulate with Xylitol gum
Stimulate salivary glands with massage after heating
Use implants when teeth are extracted

These are just the points that particularly interested me. The whole talk was informative and I hope to hear Dr Papas again in the future. 

To see the post about Part 1 of the Sjogren's National Conference click here

Other Sjogren's posts:

Sjogren's makes Life More Complicated

2012 National Patient Conference

Sjogren's Products

Sjogren's Helpers

Every chronic disease comes with its own shelf of products to make your life 'easier'.  With Sjogren's Syndrome you have many parts of the body with symptoms that you have to deal with.

                                     cgphoto.photoshelter.com

There are many strategies that you hear of to help your symptoms in one way of another, very little that helps overall.  I looked around my house and found many standbyes and possibilities.

Salagen (pilocarpine) would be the winner if there was one prescription drug I would not give up. When I don't take it my mouth and throat get unbearably dry and I cough and choke when I swallow. My voice even becomes faint.

You can have a mouthwash made with the active ingredient (pilocarpine) I found it very bitter.

There are also many artificial saliva products available like MoiStir for one. Biotene makes a special dry mouth tooth paste and mouth wash, as well as my stand-by product Oral Balance.

The dental hygienist I see suggested a little olive oil for mouth dryness and a support group member suggested oregano oil. The benefits of using MI Paste and a night guard can be found here.  As you can see Oral Balance and MI Paste get a lot of use in my house. 

I keep the tubes sitting around for a while in case I run out and need to try to get one last bit out of them. Oral Balance is a product I use every night before I go to bed. I hate to wake up and have a dry mouth. It's a gel you put between your teeth and gums before bed.

And this is a product used by singers, one of those tried and true ideas based on a natural product.

In the category of dry eyes some use a personal humidifier at their bedside.  I bought a pair of these goggles called Tranquil Eyes through the Sjogren's Society of Canada and so far used them only on a plane.

I hear that they are also great for sleeping. The spongy part that touches your eyelid can be moistened for extra sleeping comfort. 

Blepharitis is often part of the dry eye equation. I have tried these items to help.  The Blephagel was suggested by my opthalmologist.

And don't forget the nose. I have found the saline spray the most helpful item so far.  I have not wanted to use a neti pot or a nasal rinse but I would if things got worse.

When my nose gets so dry I can feel it in the sinuses and that's when I use saline spray. I find the NeilMed easiest to handle.  It probably works best if you use it every day but it's easy to get tired of working so hard to stay in the same place.  That's what happens when you treat the symptoms and not the underlying causes. A lot of work and no apparent progress, though not getting worse is what we all hope for.

This is far from a complete listing of products and is not meant to be a commercial for items. They were all here in my house even though I use some very infrequently.

For additional information there are tips at Sjogren's Society of Canada, and also at Dr Robert Fox's helpful and comprehensive site called dry .org. That was one of the first resources I used.

It's also a great benefit to attend the Annual Conference of the Sjogren's Society of Canada. The speakers are all at the top in their fields, and there is an hour set aside to give patients in the audience a chance to ask speakers and other volunteer health professionals questions of their own.