Part 5 Immune System Gone Wild: Sjogrens National Conference Dr Susan Abbey

Dr Susan Abbey is a psychiatrist at the University of Toronto who has a particular interest in the emotional aspects of physical illness, hi-technology medical interventions, and the physical and emotional impact of stress. She suggested we decide what affects us most and start from there when we try to make changes.

                         Dr Abbey during the round table discussion

She began her talk mentioning the positive effects and benefits of mindfulness or being "in the moment." That lesson was so significant to me because I had just broken a tooth five minutes before she began to speak and was so upset that I was debating going home. Instead I gave more thought to the present and remembered how much I had been looking forward to the conference.  The moment I was in was good and the problem could wait.

                             This fish has a broken tooth too.

Here is a link to a good resource about mindfulness and below is a quote from the page. 

"The term mindfullness refers to a quality of awareness that includes the ability to pay attention in a particular way on purpose, in the present moment, and non-judgementally. Mindfullness includes the capacity for lowering one's own reactivity to challenging experiences; the ability to notice, observe and experience bodily sensations, thoughts and feelings even though they may be unpleasant; acting with awareness and attention (not being on autopilot); focusing on experience, not on the labels or judgments applied to them". -- M. Krasner et al. ,2009"

Dr. Abbey pointed out to us that there is a difference between Health Status and Quality of Life (QoL). We measure QoL to determine functional capacity and well-being and monitor the changes in them. That helps us to choose and evaluate treatment options. Health status is based more on physical signs and symptoms. There are no studies on the quality of care in Sjogren's to this point and it is a very intrusive illness, as we also heard from Dr. Bookman. You may have to substitute other experiences or passions to replace what you lose to the illness.

She also pointed out that chronic illness takes a toll on the brain. Some effects of immune system disorders are depression, anxiety and brain fog. These are caused by chemicals and modulators.  A sub group of patients do worse because of genetics and immune molecules. 

Mood and pain drugs for Sjogren's cause a lot of trouble. It takes trial and error to get them right.  Much of this is biologically related, some is genetic.  In depression, treatment works for 50% to 60% of people, but doctors can't yet judge which medication will be best for specific people.

She also stressed the importance of Omega 3's (at least 1000 mg)  because we need the EPA, and also Vitamin D (she suggested 2000iu).

Omega 3's ready to go

The way the brain processes events and illness is affected by brain development and experiences in early life. Support in daily life is important. 


Better treatment often equals better function. It's a question of quantity vs quality.  When you find something fulfilling within the constraints of illness turn up the volume on the good stuff. 

Resources from Dr Abbey:

UCLA Mindful Awareness Research Center

Free meditation podcasts  

Canadian Mental Health Organization :

The Relationship between Mental Health, Mental Illness and Chronic Physical Conditions

Past Sjogren's Posts

Part 4. Immune System Gone Wild. Dr Carl Laskin and Dr Izchak Barzilay

Part 3 of Sjogren's Conference. Dr Bruce Jackson

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

Part 1 Immune System Gone Wild Sjogren's National Conference. Dr Arthur Bookman

2012 National Patient Conference

Sjogren's makes Life More Complicated

Sjogren's Products

Part 3 Immune System Gone Wild: Sjogrens National Conference 2013 Dr Bruce Jackson

Dr Bruce Jackson is an ophthalmologist at the University of Ottawa Eye Institute whose topic was  "Dry Eye-Tear Dysfunction: Are We Making Any Progress in Diagnosis and Treatment?"  He feels that ophthalmologists should take a greater role in treatment and diagnosis in patients suspected of having Sjogren's Syndrome.

We learned that the meibomian glands are a major cause of tear abnormalities and that blepharitis and rosacea are often seen in dry eye patients.

                             meibomian glands. elsevier.pt

Dr Jackson showed us the treatment protocols for dry eye as the severity increases.
To treat mild dry eye:

1. Lid hygiene, warm compress (15 minutes)
2. Lifestyle coaching (systemic medication management, stop smoking, alter computer use)
3. Environmental modification(e.g.humidifiers)
4. Allergy Control
5. Artificial tear lubricants

All of the above daily management tools continue to help even if the severity increases. 

The next steps to take in addition, if the above are not helping enough:   

1. Nutritional support (essential fatty acids e.g.Omega 3)
2. Use preservative-free lubricants (drops,gels and  ointments)
3. Topical antibiotic (short term only)
4. Cyclosporine A drops (Restasis)
5. Topical steroids (short term only)
6. Systemic tetracycline
7. Punctal plugs
8. Moisture retaining eye wear

Most of the steps above require treatment by an eye care professional yet it's good to know the possibilities you may be presented with. Dr Jackson suggested a combination of fish oils and flaxseed oil for the Omega 3 supplementation.

                                          Moisture retaining glasses dryeyeshop.com

And finally for severe dry eye, further steps

1. Punctal plugs /cautery
2. Secretagogues
3. Autologous Serum Tears
4. Surgery (tarsorrhaphy)
5. Scleral contact lenses

*It's not always the preservative in artificial tears that can irritate the eyes. Sometimes it's the buffer (borate vs lactate)

Inflammation influences the quality and quantity of the tears we produce.

                        dry as a desert freevintagedigistamp.blogspot

Loss of barrier function causes the tears' meniscus to decrease and dessicate.
It is possible to develop neuropathy of the eye even with normal tear function.
Fast food may be influencing an increase in dry eye disease.

DEWS (International Dry Eye Workshop) definition of Dry Eye Disease: Dry eye is a multifactorial disease of the tears and ocular surface that results in symptoms of discomfort, visual disturbance, and tear film instability with potential damage to the ocular surface. It is accompanied by increased osmolarity of the tear film and inflammation of the ocular surface.¹
It is accompanied by increased osmolarity (concentration) of the tear film and inflammation of the ocular surface.
1."Definition and Classification of Dry Eye. Report of the Diagnosis and Classification Subcommittee of the Dry Eye Workshop (DEWS)." The Ocular Surface 5(2): 75-92, 2007.

Dr Jackson also discussed new treatments in the pipeline such as Rejena, Cyclokat, CF101 Oral, SAR 1118, Rebamipide  and the value of autologous serum tears (terrific treatment)

Not connected to Conference but Sjogren's Related:
Here's a lesson that I found while checking the terminology for this post: 11th Annual Dry Eye Report. Recalibrate Dry Eye Management.  It is clear and well illustrated. I liked seeing the way staining of the eye looks to our eye care professionals.

                                 clspectrum.com

Other Sjogren's posts:

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

Part1 Immune System Gone Wild Sjogren's National Conference 2013,Dr. Arthur Bookman 

2012 National Patient Conference

Sjogren's makes Life More Complicated

Sjogren's Products

Some pearls from the Sjogren's National Conference 2013

The round table discussions at the Sjogren's Society of Canada Annual Conference are very popular.  Here are some small nuggets I learned in the course of one question period.

Lichen planus is an autoimmune problem. It can be treated with MI Paste or baking soda and salt. This is the recipe: Eight ounces of water with 1 tbsp soda and 1 tbsp of salt. That increases the PH in your mouth. It has a tonic effect on the soft tissues. Unfortunately not the brain.

                                       flickriver.com

In Canada LU049 is the prescription code for Lacrilube if your doctor will prescribe. The LU stands for Limited Use. This is for people who can't afford it otherwise.

For your salivary glands it is “Use it or lose it”, based on a comment by Dr Athena Pappas.  Massage of the salivary glands helps you keep the function. Using Salagen also helps. With Salagen you have 40% more function.  The Sjogren's Syndrome Foundation shows how to do this massage here.

                                       dry river bed  abc.net.au
If you lose even 30% of the function of your salivary glands your mouth will feel very dry.

If you develop black tongue clean it and brush it. Then use an anti-fungal agent or Clin Pro.

You can use omega 3 oil in your mouth, though Dr Pappas prefers Vitamin E oil from the capsules for the tongue and mouth.

The conference was a mine of information and I will pass on more of what I learned soon.  It was also an opportunity to meet new people with similar problems and interests.

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.