Taking control Part 5 - Dr Cindy Marek: Oral Health

Dr. Cindy Marek is a Dental Pharmacist at the University of Iowa in the Department of Oral Pathology, Radiology and Medicine. Her presentation was titled "Strategies for Oral Health and Comfort in Sjogren's Syndrome"

Dr Marek at the round table discussion

The practical advice she is able to give because of her experience as a clinical pharmacist specializing in dental pharmacotherapy can immediately be put to use. She explained to us how modification of lifestyle, medication administration and careful selection of over-the-counter products may lessen dry mouth symptoms and improve oral health and comfort.

She talked about how easy it is to overuse lip balm. She suggested that if it really worked well it would be impossible to sell as much - this design flaw is deliberate. The best product to use for dry lips is one that contains HPA modified lanolin. One product you can use is Lansinoh. It is sold as a product for use by nursing mothers so can be found at many drug stores as an over the counter purchase. 

Don't hang your lips out to dry

It is also a good idea to protect your lips in cold weather by using a scarf and also to make sure there is enough moisture in the air by using a cool mist humidifier. You need a sunscreen in your lip balm because you need to protect the thin and sensitive outer layer. It's a good idea to stock up in summer since it is a seasonal product.

There are over 500 medications that can affect oral dryness (xerogenic agents). These include antihistamines, antihypertensives, opiods, muscle relaxants and psychotropics such as antidepressants and antipsychotics. For the antihistamines she pointed out that products containing diphenhydramine (like Benedryl) are more drying than those which contain loratidine (like Claritin)

If you need to take a medication that has a drying effect sometimes taking a smaller dose, or perhaps a lower dose more frequently will help. Many healthcare providers are not aware of the incidence of dryness with certain drugs. Pharmacists are good resources for this information but of course you should consult your doctor about changes in medication dosages.

All stimulants are drying - this includes caffeine. Most of us are unaware of the amount of caffeine we consume. If you decide not to drink any more beverages with caffeine go slowly - caffeine withdrawal will occur if you stop suddenly.  Even gradually reducing the amount by 10% a week can help you.

I was surprised to learn that only added caffeine must be listed on labels in the US. If a product naturally contains caffeine the amount is not listed. Look for guarana, yerba mate, chocolate or coffee flavoured foods - they will contain caffeine. Even energy gummy bears have caffeine. 

From Vat19.com

Other things to avoid are alcohol-containing mouth rinses, acidic foods and beverages and toothpaste that contains SLS (sodium lauryl sulfate) which can cause tenderness and ulceration in the mouth.

According to a 2011 Cochrane review there is no strong evidence that any topical therapy is effective for relieving dry mouth. Oxygenated glycerol triester (OGT) spray is more effective than an electrolyte spray. 

In some studies chewing gum was the preferred product of patients. Chewing does stimulate saliva flow: the best gum choice is sugar free and contains xylitol or a xylitol/sorbitol mix. Cinnamon and strong flavours should be avoided

Another suggestion was MI Paste, especially at night, to give a good slick feeling in the mouth. 

Dr Marek also said "The burn is bad." If what you are eating or chewing gives you a burning sensation in your mouth, it's best that you avoid it.

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

An Immune System Gone Wild - Sjogren's Society of Canada

Dr. Arthur Bookman agreed to let us use his inspired title for the 2012 Sjogren's Society of Canada National Conference. He had used it for a webinar in the past, which you can no longer see but you can look at the slides he used and learn more about Sjogren's. 

It's a shame that it's so tough to make our immune system change its ways once it goes astray.  I wish for a miracle food or great medications.

The Sjogren's Society of Canada by now has had ten conferences, which has been a benefit to patients in Canada.

The information below about the speakers is very limited and only reflects a fraction of what they said. This conference is always one of the most informative ones I attend and in many years medical professionals get CME credits for attending.

There were 7 speakers featured with Dr Bookman starting off by giving us an overview. He says that people who come to the Sjogren's Clinic he runs have usually seen 3 doctors over 2 1/2 years before they get a diagnosis. He described Sjogren's as difficult to treat.

Then we heard from Dr Rookaya Mather. She pointed out that dry eye actually causes functional disability because of the visual disturbance and discomfort of the eye.  The effect on the quality of your life is similar to that of having moderate angina and it is best to tackle it early.  She recommends 2000 to 3000 units of Omega 3 per day from fish or from flax as being helpful.

                                        Omega 3's   anetto

The next speaker was Dr Juan Yepes talking about dry mouth, which is one of the worst symptoms to deal with if you ask me. There's a helpful product in the US called Aquoral which he recommended as the #1 prescription product.  He also recommended xylitol because it changes the action of the bacteria in the mouth, and chlorhexidine mouthwash. He mentioned this article about a proposed electrostimulative device that could help in future.

                                   xylitol molecule  wikimedia.org

As usual one of the most keenly anticipated segments was the round table discussions where individual patients have a chance to ask some questions of their own.  There were 11 tables, each with a doctor or other health care professional who would answer any questions we had. Even when your own question is not being answered it is instructive to hear the responses.


After a very good lunch we heard from Dr. Ann Parke. Her talk was titled "Sjogren's Syndrome a Lymphocyte Aggressive Disease: From Dryness to Lymphoma."  We found that 50% or more of RA patients may have Sjogren's Syndrome. There is an increased risk of lymphoma but it occurs in under 10%, and is most commonly MALT .  She mentioned a new concept that says Sjogren's is "Systemic Lupus Erythematosus (SLE) of the mucous membranes".

Dr Kevin Fung talked about Ear, Nose & Throat Complications. He sees 80% cancer patients and 20% Sjogrens and diagnoses by ocular and oral signs as well as saliva, blood work and biopsy. As an ENT doctor he deals with salivary issues, nose and sinuses, ear, thyroid and throat, including swallowing and speaking. His expertise was greatly appreciated.

Oh for the good old days of drool dogforum.com

Dr Miriam Grushka is the first person I would go to see for burning mouth syndrome. The symptoms include not only the oral burning but also dryness, the feeling that something is stuck in your throat and changes in the way food tastes. Your oral tissue can appear normal even though you perceive it differently.

Dr Cindy Hutnik was the final speaker and her talk was titled Eye Lid Facts and Fiction! I found out that 50% of people with rosacea have blepharitis. It is also very common in Sjogren's and rheumatoid disease. The lacritin which renews the eye surface is missing in dry eye.  To prevent blepharitis you need regular eye checks and also eyelid hygiene. This includes warm compresses, lid massage and lid washing. There is strong evidence that Restasis restores health to tear glands. Another point made was that avoidance of BAK (benzylchromium chloride) is important.  This is a preservative found in some eye drops. Preservative free is the better choice for frequent users and sensitive eyes.

So that's a small view last year's conference. I'm looking forward to another invigorating conference this year. If you are interested in attending you can get further details on the website at http://www.sjogrenscanada.org/ and I will see you there.