Wednesday, 6 March 2013

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

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

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 and I will see you there.


  1. great post, Annette - I learned a lot!

    My dental hygienist told me about a product called Biotene for dry mouth. Might be worth checking out

  2. Thanks for commenting Lene, I use Biotene toothpaste and Oral Balance Mouth Gel every day. Anything that helps is worth a try and they are my go tos.
    I am doing another post about products I have at home for Sjogren's symptoms. More and less useful. Looks a bit like a commercial but there is so much you can get, and so much that only improves things by a little bit.

  3. This is fantastic, Annette - I just shared it on my Blackbird at Night FB page and Twitter. I just wanted to add a note that I'm sorry I haven't been commenting for a while. My wife's mother died, and after all the energy tied up with arrangements, and now catching up with work, there hasn't been much time for activism. I'm so impressed with the output and quality of your recent blog posts and look forward to reading more in the days ahead.

    I found the view that SjS is like SLE of the mucous membranes to be very telling. I believe the overlap between SjS, SLE and RA and others will be demonstrated more as we understand the genetic disorders associated with these diseases.

    I look forward to your account of this year's conference. It is awesome that you can share the knowledge with all of us that can't attend.

    I also love that Dr Bookman allowed the conference to use the name of his talk as the theme for the conference: it's SO appropriate!

    Many thanks!

  4. I read your post about your mother in law Jane and it was very touching. Your feeling of peace was something that seems like a gift.

    I'll do my best to keep good notes on the conference. I don't know if they'll have wifi and I can tweet live at all. I may be the problem there. It's not easy to do two things at once, and socializing is part of any conference. Hearing people's stories is valuable to both parties.

    Finding A drool picture was hard. There was too much or too little in the pictures. Drool is almost unknown to Sjoggies. One of my favourite soongs has a raw sound and you can actually hear the singer "spitting" out his words - something to treasure

  5. Hi Annette - enjoying the conference is of course, first and foremost. I do hope it's fun as well!

    You always find amazing pictures. Since a friend asked me to sign up on Pinterest, it reminded me that we are very visual as well. I'm glad I had the forethought to put pictures on my blog, but they are not as relevant as yours. I just enjoy showing some art. :)


  6. I worry about the pictures that I find online and am trying to take more of my own. Your art is such an original expression and so evocative of your writing.
    Lately I've been trying to force the things that I like to mirror my experiences so am hoping that things don't get too forced. Glad to see you back. Too bad you can't come here for the conference.

  7. Thank you, Annette, I really appreciate the feedback! I started in a very simple way with internet photographs back in 1997, and over the years my art has evolved to what it is now. I hope to spend more time on it this year. Getting the time and energy is a huge issue.

    I don't find your articles forced at all. They are always informative and interesting. I did want to ask you if you would be interested at some point in doing an interview on my blog. I have decided I would love to begin to interview other Sjogren's patients and get some other viewpoints and perspectives on my blog. Let me know if you would be interested at some point.

    Oh, I wish I could come too. I unfortunately made a catastrophic error with my past 2 years taxes in that I was too busy dealing with present catastrophes and did not pay nearly enough taxes. So I am of course remedying that, but it means working myself to my absolute limits and having even less money than before. It's a stress I did not need, but I guess life has a way of keeping one honest. I felt absolutely horrible about it weeks ago, but now I am just resigned to making amends and still being able to keep as well as I can while paying back the shortfall. It may take me a year or more to catch up. :( So no conferences or travel home to Australia as I'd hoped this year. It's been over 12 years since I saw my mother.

    Take care,

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