2018 Sjogren's Society of Canada National Conference

Opportunities For Empowerment

Last year's in-person National Conference took place  last April, and here's a retrospective look at it. This year the Conference is on April 27, 2019 in Mississauga, Ontario and you can register here.

We had a very full day with informative speakers in every time slot. The day started with an introduction from Dr Lisa Prokopich, the SJSC Vice-President.

Our first speaker, Dr Julian Ambrus is Professor of Medicine, SUNY at Buffalo School of Medicine, Division of Allergy, Immunology, and Rheumatology. He gave us an overview of Sjogren's and information on "New Ideas"  He pointed out that Sjogren's is a systemic disease defined by dry eyes, dry mouth, decreased tear production and salivary flow, and it can also involve lungs, kidneys, neuropathy, vasculitis and that 5% of those affected may develop non-Hodgkin lymphomas. He told us that the submandibular gland was the first to be affected in Sjogren's, then the parotid gland, finally the sublingual gland which is under your tongue. 

Dr Julian Ambrus

After an overview of current treatments he said early diagnosis is critical, even though current therapies are inadequate. He suggests that patients with Sjogren's be followed carefully by doctors who know what they are doing. We need new therapies to restore function to tear and salivary glands, and to prevent complications and systemic problems.

Here's a partial list of treatments he gave us for the management of Sjogren's Syndrome

• Artificial tears and saliva
• Sugar free lozenges to stimulate salivary glands
• Cholinergic agents that stimulate remaining salivary glands increase secretions such as Pilocarpine in Canada/US, Civemeline in US
• Topical cyclosporine eye drops
• sometimes topical steroids
• Topical 5% lifitegrast opthalmic solution
• Punctum plugs to retain tears in the eyes longer
• Treatment of any infections

Dr Ambrus and colleagues are involved in research about IL-14, a B Cell growth factor which is increased in patients with Primary and Secondary Sjogren's. We hope this will yield good results in the future.

Our next speaker was Dr Richard Maharaj who is the Clinic Director at eyeLABS Centre for Ocular Surface Disease who told us that living with dry eye disease does not have to be a life sentence and that treatment options have exponentially increased, though there are challenges in diagnosing Sjogren's Syndrome. Eye care providers are critical in the process of diagnosis. He mentioned some in-office treatments such as LipiflowThermal pulsation for Meibomian Glands, IPL (Intense Pulsed Light) treatments for MGD, and eyelid and tear inflammation, Blephex, and amniotic membrane grafts.

One shocking fact is that 50% of adults with Sjogren's are undiagnosed. We know from past conferences that the time to diagnosis is too long - Dr Maharaj said that patients have symptoms for an average of 3.9 years before they are diagnosed.

He also gave us three rules for dry eyes. 
1. Avoid preservatives in eye drops and eye gels
2. Use a Hyaluronate eye drop eg HYLO, i-drop
3. Triglycerides - Omega 3's. We need this to be bioavailable.

We heard from Dr. Heather Palmer next. She devotes her time to applying what is being learned through science to help all people to maximize their cognitive capacity. Her topic was the much dreaded and often mentioned among patients "Brain Fog". She told us that the three main issues that affect your brain function are pain, fatigue and worry. 
Brain fog can affect your verbal skills, spatial skills and executive function, so it may affect your psychological well-being, functioning and even your relationships. Some important lessons from research that she highlighted are:

• Good relationships keep us healthier and happier
• Social connections and close proximity are good - loneliness kills
• Quality of relationships is what matter, not the numbers
• Good relationships protect the body AND the brain

We should assume we'll forget and put strategies in place to deal with that; we should schedule things to adapt to our strengths; and we should develop a toolbox of solutions to help us with issues. At the close she told us that we are empowered to change our brain functions, that we should make a conscious effort to use strategies to help us, gave us rules of thumb for 'present-mindedness'

• Stop
• Clarify
• Simplify
• Monitor

It was also reassuring to hear that brain fog exists, it is not in our minds, and that symptoms may vary from person to person.

Brainfog

This year for the first time ever we had a Patient Panel. The four members represented different aspects of the involved patient experience.

Joyce Hambly, our support group leader in the Kitchener-Waterloo area spoke about the benefits of being able to talk person to person about issues and symptoms with other people who understand. One rule of support groups is "What is shared in the room stays in the room." For new problems the group brainstorms.

Sjogren's Board member Janet Gunderson gave us her insights about being engaged and involved as a patient advisor while living in a remote rural area. Hearing her advice and knowing that she lives in northern Saskatchewan and has a really positive impact through her volunteer work was very inspiring. Even though she is somewhat isolated, she makes a valuable contribution as an engaged patient.

Annette McKinnon talked about what she learned as a patient who has been involved with the Sjogren's Society of Canada from the beginning. She stressed the value of patient organizations, especially for  diseases that are not well known. Patient groups help with awareness and education, and help people realize they are not alone with their problems. 

Then Sharon Marafon talked about that vital issue for patient groups - funding and fundraising. It's a real struggle for a small grassroots patient organization to just exist, especially when Sjogren's takes such a toll on our members. She has been an amazingly effective fundraiser and event planner for many groups in the past, and she was one of the masterminds of Sjogren's 'Old Bags Fundraiser' a few years ago. 

We were also delighted that an anonymous attendee made a generous donation and volunteered to match donations that others made at the conference. We would like to thank our anonymous benefactor.

When Dr Arthur Bookman got up to speak he was welcomed as the Chairperson of the Sjogren's Society of Canada Medical Advisory Board. He is also a distinguished rheumatologist and the Coordinator of the Mutidisciplinary Sjogren's Clinic at the University Health Network in Toronto. His talk this year was titled "Sjogren's Disease: Redefining and Repositioning"

He  began by reviewing the classification criteria for Sjogren's and stressing that these criteria need to be sensitive and specific for an accurate diagnosis. It's interesting to see how the results he sees in the clinic compare to those found in literature.

He went on to review the benefits and shortfalls of Rituxumab, which is seen to benefit salivary flow, dry eyes and mouth, fatigue and extra-glandular manifestations. Unfortunately the research results are not a slam-dunk: Maybe the wrong patients are chosen, the wrong targets are selected, or the outcome measures are not appropriate.

Dr Leslie Laing, the new President of the Sjogren's Society of Canada, spoke to us about "Controversies in Sjogren's: From Implants to Fluoride" She began by reviewing the benefits of healthy saliva flow. I had not realized the part it plays in ensuring dentures are comfortable.
Another question she addressed was about the extent to which a history of Sjogrens Disease affects the failure of dental implants. Though there may be some drawbacks in most cases the implants survived and were an aesthetic and functional solution.

Some evidence based facts from Dr Laing:

• a strong recommendation for the use of a topical fluoride
• recommendation for stimulating salivary flow to reduce incidence of caries
• moderate evidence for use of a remineralizing agent

The day closed with Dr Miriam Grushka, with a talk titled "Why is my tongue sore and why does it hurt and what happened to my taste?"

Looking at the dry mouth in Sjogren's the tissues look dry, red, irritated and may have ulcerations. This can lead to opportunistic infections, such as yeast infections which actually changes the architecture of the tongue and can lead to sore, burning tongue, loss of taste, burning mouth, and difficulty eating. 

In some cases the loss of taste is a sign of loss of tastebuds. 

For prevention Dr Grushka suggests products like Xylitol containing gums and candies or medication to increase saliva flow. Another idea was a night guard or invisalign-type tray with a remineralizing agent to be worn at night. (Note: I do this and it is helpful)

We'd like to thank our round table session hosts. You can learn a lot from experts while they are being peppered with questions from your peers. I learned that eyes are a significant frustration to most of us and that memory and cognition courses only benefit those who actively make changes. 

As usual we had a draw for donated prizes. Thanks especially to Wendy Shingler for her hand-crafted jewelry donation.

Of course this could not have been done without our sponsors  Allergan and lubricity, and our exhibitors, Allergan, BioXtra, Candorvision, Oral Science and The Dry Eye Store.

Empower Yourself: 9th Annual Sjogren's Society of Canada Conference. Dr Rookaya Mather

The second presentation at the Conference was from Dr. Rookaya Mather. She is Associate Professor of Ophthalmology at the Ivey Eye Institute at the University of Western Ontario, specializing in Cornea and External Eye Disease, and a long time member of the Medical Advisory Board of the Sjogren's Society of Canada. 

She spoke about Understanding and Managing Dry Eye Disease, and how it affects those who live with it every day. Dry Eye Disease (DED) is the most common reason for people over the age of 40 to visit an eye care professional and may be associated with morbidity and reduced quality of life.  It is generally underdiagnosed and undertreated.

It is also a clinical challenge for the eye care professional since it is time-consuming to diagnose and manage, it is usually not curable so the patient is frustrated, there are numerous causes and exacerbating factors and the patient reported symptoms do not always correspond to the clinical signs.

Here are the symptoms of dry eye:
Burning
Foreign body sensation
Itching
Redness
Soreness
Dryness
Gritty or sandy sensation
Light sensitivity
Sticky or crusted lashes
Fluctuating or transient blurred vision

Dr Mather laid out the steps we need to take to be more comfortable, despite having dry eyes:

1. Tear Supplementation

2. Control of Inflammation using topical corticosteroids or systemic          immunosuppressants

3. Reduce loss of moisture through evaporation by modifying environment and   behaviour

4. Support meibomian gland function

5. Nutritional support

6. Enhance tear production: Salagen, Restasis

Dr Mather gave us advice on how to accomplish these goals, and also sympathized about the costs of the products we need. If a product has no DIN (drug identification number issued by Health Canada) it is not covered by any type of insurance. 

She cautioned us to think about blinking: Remind yourself to blink more often and try blinking up to 3 times in a row. Also, read differently. Use artificial tears before you sit down to read or use your computer.

Try to stay ahead of the dryness to make your quality of life better. You need to intervene before your eyes are in jeopardy - it's possible not to feel the effects of dryness. With uncontrolled inflammation you can develop corneal perforation.

One piece of advice for people with meibomian gland dysfunction was to use hot soaks and then wash the eye area with Spectrogel or Cetaphil.

People over 65 are more likely to report having dry eye. Since this is an inflammatory disease there is no easy cure. Anything in front of the eyes is going to help to reduce airflow across the eye surface so try to avoid airflow, especially when it is hot and dry. 

You can find a wide variety of eye protection from moisture chamber glasses to Panoptx which is wraparound eyewear  and other alternatives. Fortunately regular drugstore wraparound sunglasses which fit over my prescription glasses are enough for me so far.

Moisture chamber glasses to reduce evaporation

Sometimes you need to work on your problems related to Sjogren's Syndrome a few steps at a time. Dr Mather suggested we take our top 3 problems to the doctor each time we have a visit and work on gradually improving our situation, step by step.

You need to own your condition, so that you know how to help yourself. With a chronic disease like Sjogren's, education is particularly important to empower yourself and protect your eyes. That is one of the reasons I love to attend conferences - to learn more from experts and also from other patients I meet there.

Sjogren's Syndrome and TMJ Dysfunction: Bad Companions

This year I was finally able to see my chosen dental surgeon - one who specializes in oral and maxillofacial surgery. After 30 years of rheumatoid arthritis (RA) and hearing again and again over the years that if my jaw was sore I must be grinding my teeth, I found out the real truth - RA had severely damaged my TMJ (temporomandibular) joints. Since the damage happened over many years, the adjustments that my body made in response to the joint damage have left me with good function, even though a CT scan shows a much different picture.

It took a year to get the initial appointment and I expected to be on the surgeon's list for arthrosopic surgery for another year but, since the doctor was unexpectedly given more operating room time the process sped up and I had the procedure early in March. 

You might wonder what happens in this surgery. Basically the doctor uses a tiny camera inserted through an incision in front of the ear and just above the jaw to see the joint, and then uses small instruments inserted just above the camera to remove damaged cartilage, smooth rough surfaces, and clean the joint space - even to the extent of repositioning the disc if needed. 

You would have thought that a smart patient with Sjogren's Syndrome would have a clear idea of what is necessary for good self care when they headed to a hospital for jaw surgery. I thought I was well prepared but I was remembering other surgeries on my hands or feet - the extremities where a nerve block is the obvious way to control pain. 

I'm sure my eye was this red

Of course when the operation is on your face that strategy won't work, and the doctor is likely to want to make sure that you keep breathing regularly while he works. As a result the doctor started with a very effective decongestant which dried my whole sinus cavity very thoroughly.

I took a tiny sample of Oral Balance with me for dry mouth - it was a lifesaver, as was bargaining with the anesthetist to be able to use some Evoxac prior to the surgery. I was afraid that a breathing tube combined with a dry throat would feel dreadful.

Given the way I felt coming out of the anesthetic, I should have taken the whole medicine cabinet of over-the-counter products I normally use along with me for afterwards.

my usual eyedrops

My sinuses were so dry that I was desperate for saline spray to help the with headache and pain. Thank goodness for the Evoxac that helped my mouth and throat. Who expected the effect on my eyes to be so devastating? After I came out of the anesthetic I was unable to shut my right eye - the muscles on the right side of my face would not respond for hours after. That meant my eye was agonizingly dry, and I had no eye drops with me. 

Where was a saline spray when I needed it?

At least I had some dry mouth gel with me

So the moral of the story is - if you have Sjogren's and need to have an operation involving a general anesthetic, and the doctors express concerns for your airway - take the products you commonly use to the hospital with you so that once you are reunited with your belongings you can use them. The hospital was able to get eye drops, but not fast.

The first title I thought of for this blog post was "Don't Leave Home Without It" but it needs to be Them. I plan to restock my purse to be ready for anything. 

At the Arthritis Alliance Symposium one of the rheumatologists needed eyedrops suddenly. 
What did she do?
Asked a patient.
She had a vial in minutes.

Taking Control Part 7: Dr Sherise Ali: Brain Fog Sjogren's 2014

Brain Fog in Sjogren's Syndrome is a topic that quickly found an audience at the National Sjogren's Conference in Canada this year. This topic was addressed by Dr Sherise Ali this year. She is a neuropsychiatrist and has recently written a chapter on psychiatric care of the rheumatologic patient for the Harvard Medical School and Massachusetts General Hospital textbook of Psychiatry of the Medically Ill.

Brain fog is defined as "a generalized dysfunction of concentration, short-term memory and cognitive speed which is disruptive to the patient's lifestyle and not attributable to another cause."  There is no specific pattern and there can be ripple effects in your life. Compared to traumatic brain injury brain fog is mild. Your IQ is not decreased but you may need to find alternate routes to get to the same endpoint.

It is disruptive to the way you feel about yourself when your cognitive speed is slower that it used to be but Dr Ali said it should have no dramatic effect on your function.

Brain Fog by Annette McKinnon

Pain also has a deleterious effect on brain fatigue. So far brain fog is not consistently found to be associated with Anti-Ro or Anti-La antibodies and no one antibody has been isolated that is consistently associated with or specific for CNS (Central Nervous System) symptoms.

In 50% of patients who undergo an MRI for diagnosis the findings are normal, showing the limited role of MRI in this diagnosis. The most effective way to diagnose brain fog is neuropsychological testing. Dr Ali said that this symptom has an insidious onset, is non-progressive, not necessarily associated with severity of illness and can occur at any time. 

Brain fog is becoming more and more recognized as a symptom of CNS involvement in Sjogren's Syndrome. The most likely mechanism is inflammation of the cerebral vasculature. 

Dr. Sherise Ali speaking at the National Sjogren's Conference

Taking control of this symptom is not easy, but it is very possible. Dr Ali gave us these conclusions as well as some strategies to support our brains.

Conclusions:

• Play an active role in your medical management - inform your   doctor of OTC or herbal remedies and take your agreed on    medications.
• Talk to your doctor and ensure there is no other medical cause
• Use behavioural strategies to circumvent cognitive issues
• Keep socially, physically and mentally active
• Practice good sleep and dietary habits
• Prevent, recognize and manage clinical Depression and Anxiety
• Use adaptive coping mechanisms
• Minimize stress, anxiety
• Seek positive relationships
• Join a support group
• Seek counselling for complicated emotions
• Seek treatment for suspected depression and other psychiatric conditions
• Allow yourself to feel sad sometimes, it is a normal emotion

Strategies:

Learn a new language

Brain training, games, puzzles
Physical activity (to increase blood flow to the brain)
Pace yourself
Engage in creative activity
Good sleep is important. Can try a pre-bed ritual.
Seek positive relationships
Manage negative emotions
Identify your stressors and work on them
Seek treatment/professional help and/or a counsellor
Deep breathing and progressive muscle relaxation can help
Acceptance as a method of easing frustration was suggested. 

Watchwords from Dr. Ali :

"Use it or lose it."
"You don't want to lose synapses."

Advice on circumventing cognitive issues with behavioural strategies:

Make lists of things you want to do each day. Jot things down as they occur to you.
Keep pencil and paper handy near the phone.
Take notes at work, especially if you are learning a new task - take notes on all steps involved.

Taking Control Part 2 - 2014 Sjogren's Society of Canada Dr Mahvash Navazesh: Oral Manifestations

The second lecture of the day began with Dr. Mahvash Navazesh, a professor at the Ostrow School of Dentistry at the University of Southern California, introducing herself as the "Spit Queen". The title of her talk was Oral Manifestations of Sjogren's Syndrome  Most people take saliva for granted," she says. "It's one of the least-respected body fluids."

https://student.societyforscience.org/article/spit-power

The level of dryness in the mouth predicts progression of the disease. Teeth show the effects of mineral loss long before the caries develop (2 to 2 1/2 years). To save teeth we need early detection. Saliva can now predict how susceptible we are to decay and which surfaces are at risk.

We learned that 1% of saliva is not water, but is composed of ions, proteins, small organic molecules, enzymes and microorganisms and by-products. Since dental caries is the most common infectious disease we really need the help of saliva to protect our teeth. It can provide buffers to neutralize plaque acids and to promote remineralization of teeth, as well as by cleansing the surfaces and by maintaining a balance between "good guys and bad guys" in the mouth.

By the time dryness is evident people with Sjogren's have already lost 50% of their salivary gland function. If the saliva loss is a result of medication use, once you stop using the medication function returns in two to three months. When the loss is from Sjogren's it takes constant care and lifestyle adjustment to deal with situations like waking up with your tongue stuck to the roof of your mouth or even taking care not to sample any dry food in a store because you might choke. 

Dr Mahvesh Navazesh

Normal oral care is not enough for us. We have to do more and here is a list of good practices from Dr Navazesh's slides:

Dietary counseling
Avoid alcohol, cariogenic snacks and soft drinks
Avoid dry, crisp, crunchy food and snacks
Meticulous oral home care
Daily oral hygiene, including oral prostheses
Avoid alcohol containing mouth rinses
Daily use of fluoride toothpaste and mouth rinse
Regular professional oral evaluation and care (frequency depends on severity and compliance)
Office application of fluoride varnish, gel or mouth rinse
Hydration/lubrication
Keeping lips and mouth lubricated
Saliva stimulation through xylitol gum, sugarless mints
Use of pilocarpine or evoxac to make the glands work harder

Dentists generally "drill, bill and fill" and sometimes I feel like my mouth will be a gold mine but even a great dentist can't guarantee their work when your oral environment is not normal. On the plus side Dr. Navazesh says that there is hope on the horizon, possibly through gene therapy.

Here are some articles that give more details of Dr Navazesh's work:
Salivary dysfunction associated with systemic diseases: systematic review and clinical management recommendations 

Spit Power

Here's the link to Part 1 of the coverage of the 2014 National Conference of the Sjogren's Society of Canada

Clinical Studies

Anxiety was the main reason that I started reading medical journal articles.  It's almost like an amusement park - you're up, then you're down.  There are so many complications I have read about that I don't have.  As a patient usually watchful waiting is the best idea for me.  So goodbye to cachexia and amyloidosis for now, not to mention interstitial lung disease.

The last study I read appears here http://www.ncbi.nlm.nih.gov/pubmed/22709490

A study of the prevalence of sicca symptoms and secondary Sjögren's syndrome in patients with rheumatoid arthritis, and its association to disease activity and treatment profile. 

CONCLUSION: Among the 307 RA patients, 28% had at least one sicca symptom. The estimated minimum of prevalence of sSS in 307 RA patients was 3.6%. Secondary Sjögren's syndrome was not found in RA patients treated with biologics such as TNF blockers.

Well I wish that conclusion about not seeing Secondary Sjogren's in patients treated with TNF blockers were accurate in people outside the sample that was used.  Really, I want it to be prophetic.  But it's just another dip in the RA roller coaster.

Could they be implying that it prevents the onset of Sjogren's Syndrome in Rheumatoid Disease? That would be a good reason to tip the balance in favour of biologics for RA treatment if you ask me for my opinion.

Sjogren's is unpleasant to deal with, treating the symptoms is costly and it also adds limitations to one's life.