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.

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.