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.

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.