Taking Control Part 3 - Sjogren's Conference Dr Ann Parke: Systemic Sjogren's Syndrome

Dr Parke has been a huge supporter of Sjogren's Canada almost from the beginning. Maybe it's due to some of her early training at McMaster University in Hamilton and the Canadian link. Now she is a leading practitioner and educator in this field and we were delighted to welcome her to the conference.  Here she is with Sjogren's Society of Canada President and Founder Lee Durdon.

Photo from Sjogren's Society of Canada. Dr Ann Parke on right, President Lee Durdon on left

Dr Parke began her talk by describing Sjogren's Syndrome as a lymphocyte aggressive disease, that preferentially attacks the exocrine glands, ie the glands that have ducts. She gave three other ways to describe it:
1. an "autoimmune exocrinopathy"
2. an "autoimmune epithelitis"
3. Lupus of the mucous membranes

I love to know how illness is described by doctors so that I am not taken unawares in a visit.

There are a number of criteria to be met to get a diagnosis of Sjogren's Syndrome. They include subjective complaints and objective tests of dryness, pathological changes and auto-antibody production.
Dr Parke described a four pronged approach to management of Sjogren's: 
1.  Manage the complications. 
2. Manage the disease
3. Monitor for serious complications
4. Education

As part of management good dental care is a key with frequent visits to the dentist, fluoride and anti-microbial therapy and the stimulation of secretions (saliva) with oral cholinergic agonists like pilocarpine (Salagen) or cevimiline (Evoxac).  This benefits patients by increasing saliva flow and reducing dental caries and oral candidiasis.  Speaking for myself it helps me with my voice and with swallowing. It's easier to talk and I don't choke as much as I did without it.

Salagen pills in natural habitat

Dr Parke says it's an exciting time in Sjogren's Syndrome, with new treatments in development.

Rituxan has been used since 1997 and has a good safety profile in treatment of primary Sjogren's. Orencia is being looked at as a possibility. Dr Parke uses anti-inflammatory agents like hydroxychloroquine, low dose prednisone, methotrexate and anti-BLYS. She said it takes two months to see results from plaquenil. 
Prednisone is good but it is necessary to watch out for side effects. 

One thing she stressed is that TNF inhibitors do not work.   

There was an open label study of Belimumab in SLE (Lupus) that covered 1746 patient years. At the end of the study 50% of the patients wanted to stay on it. That is a very impressive number. Over the long term patients continued to improve and their steroid use decreased.  Since Sjogren's is a cousin to lupus there is a lot of interest in a potential trial of belimumab in Sjogrens.

In the education area we need to raise awareness in patients, their families, health professionals and funding agencies. That's a big task. 

During the round table discussion I heard more facts from Dr. Parke. 

There is an association between PBC (primary biliary cirrhosis)
and Sjogren's Syndrome - some call it dry liver syndrome. The duct/vein/artery is the biliary triad seen in the liver with PBC. 

Happy Liver from PlushAnatomy on etsy.com

There was one funny moment when Dr. Parke answered a question about livedo reticularis and someone misheard her and started to talk about libido. (Quite a jump)  She said livedo can be associated with clotting disorders and anti-phospholipid syndrome, so one more thing to think about since it is also associated with Sjogren's syndrome.

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

Taking Control Part 1: 2014 Sjogren's Society of Canada National Conference Dr Arthur Bookman: Sjogren's Overview

The 8th Annual Conference got off to a good start with comments from President and Founder Lee Durdon. She has been responsible for all of the conferences to date and they just keep getting better.

For the last two years the conference has been accredited as Multidiscipline CME/CE so we have started to see more doctors, dentists and hygienists among the attendees.

Lee said that Sjogren's is like an iceberg.

The Titanic reminds me of icebergs

On the surface there does not seem to be much happening, but the person with the condition knows that they have been besieged. Taking control seems impossible, so we hope the education and connection provided by the conference helps patients to develop a sense of optimism and empowerment.

Being able to cope better with this immune system gone wild is an enabling experience.

Dr Arthur Bookman's talk started the day. He called it "More Than a Nuisance". That is certainly a good description of our own personal iceberg experiences with Sjogren's. 

Dr Bookman is the Co-Chair of the Medical Advisory Board of The Sjogren's Society of Canada. This group of experts advises the Board of Directors and recommends scientific and research goals for the Society. You can see the member's names on the website of Sjogren's Canada.

Dr Bookman starts the conference yearly with an always updated "Overview of  Sjogren's Syndrome".  Of the patients seen at the Sjogren's Clinic that he oversees, 76% had a delayed diagnosis, most often because the healthcare professionals they saw were unfamiliar with the disease. This is the case even though most patients had already seen four professionals before being diagnosed. With numbers like that it is easy to see why our Society feels that increasing awareness is so important.

Dry eye and mouth is worse than it sounds

Dr Bookman also told us that 70% of clinic patients have dry mouth, 60% have dry eye. The diagnosis of secondary sjogren's syndrome may on the way out. Now patients with another autoimmune disease like rheumatoid arthritis, are described as having Sjogren's as well as RA.

One tip he gave us was to massage the salivary glands daily to avoid having them become painful and swollen. His instructional slide for this was by Dr Ava Wu, like this one on the Sjogren's Foundation site.

One hopeful sign for the future is a small trial that seemed to be successful. It describes an allogeneic mesenchymal stem cell treatment that had good results and no adverse events.

There's always a mouse - NOD or ICR?

Sjogren's is a medical syndrome with no one defining element or gold standard test. There are 6 criteria including dryness of eyes and mouth and 4 of them have to be met for a diagnosis. One of those 4 must be a salivary gland biopsy or a blood test for the Ro (SSA) or La (SSB) antibodies.

It is always interesting to hear about the Devins Illness Intrusiveness Scale in which patients with various disease rated the issues they face daily. Sjogren's ended up being almost the same as Multiple Sclerosis in terms of effect on quality of life.

Dr. Bookman at the round table discussion


Through trying to find Dr Ava Wu's slide for salivary gland massage I found this, in case you want to read about Sjogren's at a high level.
Sjogren's Syndrome book chapter  by Dr Ava Wu, Dr John Whitcher and Dr Troy Daniels
Head and Neck Manifestations of Systemic Disease  It's Chapter 2.

Links to Sjogren's posts from the past:

Part 6. Immune System Gone Wild. Dr MiriamGrushka and Dr Lisa Prokopich

Part 5 Immune System Gone Wild Dr Susan Abbey 

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

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

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

Part 1 Immune System Gone Wild Sjogren's National Conference 2013, Dr. Arthur Bookman 

Sjogren's makes Life More Complicated

2012 National Patient Conference

Sjogren's Products

It's Just Damage??

Once you have a long history with inflammatory arthritis life can become even more frustrating than when it's a new diagnosis.  
It is not as easy to recognize active disease when much of the joint cartilage has been destroyed and you have many soft tissue changes in or near your joints. You may feel strongly that your body is still being attacked but the RA becomes more subtle in the ways it shows itself. 

I asked my own rheumatologist if the disease ever does burn out, as people used to say it did, and his short answer is "No."

My vision of 'burnt out' means the RA is dead and gone, leaving only the grim aftermath

My friend suggested this topic and it struck a chord with me. Her hands are like mine - one look is enough to tell people we have autoimmune arthritis. She has had it for over 25 years and copes well. What she wants now is a change to a more effective treatment; however her doctor tells her that she does not have enough active joints (5 is the magic number) to justify this. He's been treating her issues with cortisone injections, some general and some in various joints and since November she has had 10 of them. That's almost enough to put you into adrenal failure once the cortisone stops and you are "cold turkey."

As cold as a turkey can get

Since RA is a systemic autoimmune disease it may be active in other areas of your body that do not show up in a standard joint count. So many effects of RA are known as extra-articular, meaning they occur outside of the joint. I read one study done over a period of 46 years that concluded the incidence of these other manifestations of rheumatoid arthritis has not decreased.

My support group friends who have had the same kind of lengthy experience with RA are also seeing new problems showing up as they age.

For example look at Polly who now has lung fibrosis and liver damage. Her rheumatologist kept telling her that the honeycombing picture of her lung base is beautiful... a textbook example. She told him..."well, it’s not your lung with the honeycombing". 

In "Up-To-Date" which is the first choice of many doctors when they make decisions at the point of care you will find this advice: A person with end-stage rheumatoid arthritis has little or no evidence of ongoing inflammation but often has significant joint damage with deformity and loss of joint function. End-stage rheumatoid arthritis treatment includes therapies that reduce pain and slow or prevent additional changes in joint structure and function.

This advice sounds remarkably like it will help you achieve the status quo. While I'm worrying about that I guess you won't be surprised to see this paper* that says patients with later onset of RA (meaning over the age of 58) have more erosions, are more likely to receive steroid medications, and are treated with fewer DMARDS.
*Age at onset determines severity and choice of treatment in early rheumatoid arthritis: a prospective study.

We all hope not to need a wheelchair

I also looked at the musculoskeletal chapter of the Power Study. (Project for an Ontario Women's Health Evidence-Based Report) 

Among the many interesting facts stated, I found out that fewer than half of the women RA patients over 65 in Ontario were on first line treatment (women 49.5% / men 46%). How do we reconcile this with Treat to Target?

It's a struggle for everyone. There are too few rheumatologists, not enough awareness and a real lack of funds. Surely there are better ways of treatment that we can adopt for the future. I hope that constantly improving access to information and more active and aware patients will help make changes.

As it is now those of us with a rheumatologist  have "got lucky". But will we be able to get out of the holding pattern and back to real effective treatment when it's considered "just damage"?

Sjogren's Syndrome and the National Conference 2014 (Taking Control)

It's spring almost everywhere and time for the National Conference held by the Sjogren's Society of Canada.  "Taking Control" is the name of this year's event.

Spring Crocuses

There is a great deal of evidence that suggests that patient knowledge, skill and confidence with managing chronic disease is a good indicator of better outcomes.

This weekend I saw Sjogren's Syndrome spelled like this: Sourjons, Soujgrens,Sjorgen's and Sojourns, all by different people who suspected this was a diagnosis that they would be adding to their other autoimmune disease(s). You can only imagine how difficult their searches for accurate information are going to be.

The upcoming National Sjogren's Conference should be a great way for both patients and health care professionals to learn more reliable facts. All you need to do is register and come to the Delta Chelsea in Mississauga on May 3. Health care professionals who attend are eligible for continuing education credits.



I am planning to take notes and post what I learn as I have in the past. This conference has a distinctive special feature. For one hour the speakers and other volunteer heath care professionals from Sjogren's related fields will host round table talks where attendees have a chance to ask personally relevant questions.  It's great to have that opportunity and also interesting to hear about the problems others face.

Here's a quick overview of the speakers and their topics.

Dr Arthur Bookman, the co-ordinator of the Multidisciplinary Sjogren's Clinic at Toronto Western Hospital and co-chair of the Sjogren's Canada Medical Advisory Board will start the program with "An Overview of Sjogren's Syndrome."

The talk on "Brain Fog in Sjogren's" by Dr. Sherise Ali, Neuropsychiatrst, is sure to get a good reception. This is a subtle complication that some doctors don't really believe in. The role of medical treatment is limited so for patients any ideas for taking control will be welcome. 

Dr. Cindy Marek's presentation is titled "Strategies For Oral Health and Comfort in Sjogren's Syndrome." For those of us struggling with this symptom new strategies and an understanding of  the causes will be welcome. Her field is dental pharmacotherapy. 

Dr. Rookaya Mather will discuss "Tear Film Dysfunction in Sjogren's Syndrome." She manages patients with complex ocular surface problems.

Dr. Ann Parke is a rheumatologist who studied in the UK and Canada before she settled in the US at the University of Connecticut. She is speaking about "Current Treatment Options and New Therapies On The Horizon." As an active researcher her opinions are always informed and welcome. She is the co-chair of the Sjogren's Canada Medical Advisory Board, as well as serving on the International Sjogren's Syndrome Advisory Committee. 

"Oral Manifestations of Sjogren’s Syndrome". Dr. Mahvash Navazesh, DMD, Dentist will raise awareness about the role of saliva in health and disease and will focus on the common oral complications associated with salivary gland hypo-function in patients with Sjogrens

Dr Raed Alhusayen "Sjogren's Syndrome and the Skin." His areas of interest are autoimmune skin diseases and skin lymphoma.

Dryness of the mucous membranes is a hallmark of Sjogren's Syndrome

This is the 8th Annual Conference.  You can register at the Sjogren's Society of Canada website


Notes for Health Care Professionals:
Physicians will earn 7.25 Continuing Medical Education Credits approved by the Canadian Rheumatology Association (CRA) and the Royal College of Physicians and Surgeons.

The Sjӧgren's conference this year will allow your healthcare professionals to receive accreditation if they attend. Optometrist, Dentist, Hygienist, and health care professionals can receive CE credits for attending the Saturday Conference.