Intimacy, Sexuality and Sjogren's Syndrome. Sjogren's National Conference 2015

In comments and feedback to the Sjogren's Society of Canada members have indicated a wish to hear more about a topic that is usually kept in the closet - intimacy. In 2015 we had a great speaker who gave us useful information about intimacy and sexuality.

Many of us have brought this issue up during doctor visits and have found that many health care providers seem to be uncomfortable with this topic and do not offer much advice. 

Since this is so crucial to maintaining our relationships, we were happy to hear Iris Zink, a Rheumatology Nurse Practitioner and President of the Rheumatology Nurses Society, speak on the topic of "Intimacy, Sexuality and Sjogren's Syndrome." Her advice sounded excellent for people with any chronic disease.

Normally she lectures to audiences of health care professionals across the United States. In her role at the Beals Institute she is known as "the sex lady" and I think we may have been her first audience of patients.

I elect Iris Zink as our most memorable and original speaker ever. 

When I first noticed her in the room on the morning of the Conference I wondered about her red and silver boots but I had no idea that underneath her ordinary white jacket she was wearing a Wonder Woman cape.

  Note the pointer in Iris's right hand

Her no-nonsense talk was straightforward and clear - we can't keep treating Intimacy and sexuality as the elephant in the room. Embarrassment on the part of the patient and healthcare provider results in no discussion.

Elephant in the room

It was too bad her audience wasn't bigger. She got her message across in a very compelling way - so much so that if Iris wrote a book I would give copies away as a public service. Her lecture was helpful for patient and provider communication, as well as for patients and their spouses.

She told us that 66% of patients with hip and back Osteoarthritis, 62% with Rheumatoid Arthritis and 71% with Fibromyalgia have difficulties with sexual problems. 

She stressed that we should accept what we've got, and told us the brain is 90% of sex, the skin only 10%. Her presentation went over well with the mixed audience. 

The main issue is how we start the conversation and how we communicate with each other. For instance: Complete this sentence - "I miss ............." when you and your partner discuss intimacy. Talk, touch and practice. She defined sex as the ultimate union of the body and the mind.

Don't forget your Kegel exercises, men too. She suggested doing Kegels 30 minutes before sex to increase the blood flow to that part of the body. 

Her talk was optimistic and empowering. Most of the people in the room were smiling at the uninhibited style and the anecdotes and cartoons that drew us in. 

We were even given homework to do with our partners:
1. Talk to one another
2. Spend 30 minutes touching each other without intercourse or orgasm
3. If you are interested in steamy sex talk you have to practice.
4. Know your body and what makes you aroused
5. Date!!! Make it a priority!

All who wanted came home with catalogs so that we could have a look at some of the possible intimacy enhancing products.

References:

Iris Zink wrote an article called "A Rheumatologic Perspective on Intimacy and Chronic Illness" for The Rheumatologist - an official publication of the American College of Rheumatology (ACR).

A study by Bitzer and Platano that Iris referenced concluded that "sexual problems are frequent in many clinical conditions, but are not yet a routine part of diagnostic workup and therapeutic planning." She mentioned that 40% of ObGyns don't ask about sexual function.

Empower Yourself: 9th Annual Sjogren's Society of Canada Conference: Dr Ava Wu, Part 3

We were excited to see Dr. Ava Wu at our conference for the first time. She is a Professor and Researcher in the Department of Orofacial Services and has seen thousands of patients at the Sjogren's Clinic at the University of California, San Francisco where she is the Director. Dr. Wu is also the co-author (with Dr. Troy E. Daniels, DDS, MS) of Chapter 16, "The Dry Mouth" in the newest "The Sjogren's Book" - Fourth Edition.  She sees patients as part of the International Sjogren's Syndrome Registry (International Collaborative Clinical Alliance (SICCA))

Dr. Ava Wu, DDS

She demonstrated very graphically how little saliva is produced by a patient with Primary Sjogren's Syndrome. 

Dry mouth is more common in women than in men. This is the definition Dr. Wu used:  

"the sensation of oral dryness begins when unstimulated salivary flow decreases from 40-50% of the baseline flow rate." Dawes, Journal of Dental Research

Some of her suggestions were new to me, like adding flavoured oils such as mango, peppermint or lime flavoured olive oil, or omega 3 or flaxseed oil to drinking water to ease the dryness. That fits in with advice from my dental hygienist to swish a little olive oil around in my mouth when it is uncomfortably dry. I'm always happy to gain a new strategy. 

She stressed keeping gums healthy, and suggested onlays rather than crowns because less of the tooth is removed. It's more conservative dental care.
Dr Wu also suggested using a warm water baking soda and salt water rinse if you have discomfort in your oral cavity. 

Here's a picture showing the difference between an onlay and a crown:

She mentioned a prescription product called NeutraSal that comes in a powder form and is dissolved in normal tap water. It is a supersaturated calcium phosphate rinse that may be helpful for discomfort relief as well. 

I followed her suggestions for fluoride varnish for your teeth once a year at the dentist, and a mouth guard at night. If you use Prevident you should not rinse after you spit it out. Using MI Paste as a remineralizing agent is also recommended - That was good news because I currently use it on my teeth under my night guard.

Dr Wu has also made a video that gives surgeons tips on doing a salivary gland biopsy.

To increase the pH in your mouth you can use a bicarbonate mouth rinse. I'm sorry I could not write fast enough to get Dr. Wu's instructions. This type of rinse would be good to use after you eat acidic food.

Empower Yourself: 9th Annual Sjogren's Conference. Overview by Dr Bookman

The 9th Annual National Conference of the Sjogren's Society of Canada was held on May 2 at the Delta Armouries Hotel in London, Ontario.  The theme this year was "Empower Yourself" By exploring current findings in Sjogren's Syndrome, along with the "elephants in the room" patients should be able to manage their symptoms better.  

There is now a great deal of evidence that suggests that patient knowledge, skill and confidence with managing chronic disease helps us to have better outcomes. We must pilot our own planes because we're the only ones dealing with our Sjogren's full time. Health care professionals only check in to help us a few hours a year. That's another reason that learning more and talking to peers at the conference is such a benefit.

Plane model of Self-management - you're the pilot

As in the past, Health care professionals who attended were eligible for continuing education credits.

After an introduction by President and Founder Lee Durdon, 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 opened up the program with "An Overview of Sjogren's Syndrome." He told us how Sjogren's is diagnosed, the major manifestations and the impact it has on a patient's quality of life, as well as some new knowledge he has learned through studying Sjogren's patients.

There's a lot that goes into diagnosing Sjogren's Syndrome. These are the American-European Consensus Criteria.

Ocular symptoms:

1. Have you had daily persistent dry eye for more than 3 months?

2. Do you have a recurrent sensation of sand or gravel in the eye?

3. Do you use tear substitutes more than 3x per day?

Oral Symptoms:

1. Have you had a feeling of dry mouth for more than 3 months?

2. Have you had recurrently or persistently swollen salivary glands as an adult?

3. Do you frequently drink liquids to aid in swallowing dry food (the cracker sign)?

Ocular Signs:

1. Schirmer's test

2. Rose bengal score or other dry eye score

Histopathology:

Salivary gland biopsy

Salivary gland involvement: At least 1 is positive.

1. Unstimulated whole salivary flow (1.5 ml in 15 minutes)

2. Parotid sialography

3 Salivary scintigraphy

Autoantibodies:

Blood test for antibodies to Ro(SSA) or La(SSB)

As you see some of these are questions asked of the patient (subjective) and some are determined by testing (objective) so there are two elements to the diagnosis. You need to have 4 of the 6 criteria or else an abnormal biopsy for a diagnosis.

For the unstimulated salivary flow the patients spends 15 minutes spitting into a flask. 2 to 4 cc is normal. With Sjogren's it's usually only 1 1/2 cc.

Many patients are less than happy with Doctors  because it usually takes at least 3 years and as many as 3 doctors before getting a diagnosis of Sjogren's. Dryness of the mucous membranes is a hallmark of Sjogren's Syndrome - that takes in all of them, even beyond mouth and eyes, to include ears, nose and vaginal tissues.

Fortunately Dr Bookman had encouraging news about the possibilities of Rituxan and other new research.

He also reminded us that a first order of advocacy would be to work on both insurance companies and on the government for a more favourable treatment of damage to the teeth caused by Sjogren's Syndrome. 

Empower Yourself at the 9th Annual Sjogren's Conference!!

It's spring almost everywhere and time for the National Conference held by the Sjogren's Society of Canada.  "Empower Yourself" is the name of the conference. We'll be exploring current findings along with the "elephants in the room" to help you manage better. Presentations on new topics of Fatigue and Intimacy and Sexuality in Sjogren's will be discussed. 

Our Spring Crocuses are not up yet.

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.

Lately I've seen Sjogren's Syndrome spelled many different ways: 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 will be a great way for both patients and health care professionals to learn more reliable facts. All you need to do to attend is register and come to the Delta London Armouries Hotel in London, Ontario on May 2. 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. Our conference has a distinctive special feature. For one hour the speakers and other volunteer heath 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. Sometimes they match your problems.

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." He will tell us how it is diagnosed, the major manifestations and the impact it has on a patient's quality of life.

The next presentation is from Dr. Rookya Mather. She is the Associate Professor of Ophthalmology at the Ivey Eye Institute at Western University. Her topic is Understanding and Managing Dry Eye Disease and she'll be helping us to understand Dry Eye and how this affects those who live with it and have to manage it every day. Many of her patients have complex ocular surface problems.

We are excited to see Dr. Ava Wu at our conference for the first time ever. She is a Professor and researcher in the Department of Orofacial Services and has seen thousands of patients at the Sjogren's Clinic at the University of California, San Francisco where she is the Director.   Lately, she is also the co-author (with Dr. Troy E. Daniels, DDS, MS) of Chapter 16, "The Dry Mouth" in the newest "The Sjogren's Book" - Fourth Edition.  She sees patients as part of the International Sjogren's Syndrome Registry (International Collaborative Clinical Alliance (SICCA))

This year Dr. Arthur Bookman has added a new topic - "Fatigue and Sjogren's Syndrome"  This is one of the most disabling features of Sjogren's Syndrome" He will explore the possible causes, ways to minimize fatigue and promising new medications.

In comments made over the years members have indicated a wish to hear more about one of those topics that is usually kept in the closet. I have brought it up a few times but most Doctors seem to be uncomfortable with it and do not offer much advice. Since intimacy and all it implies is so crucial to maintaining relationships we will be happy to hear Iris Zink, a Rheumatology Nurse Practitioner and President Elect of the of the Rheumatology Nurses Society speak on the topic of "Intimacy, Sexuality and Sjogrens's Syndrome."

"What's New In Dry Eye Products?" This talk by C. Lisa Prokopich, OD, MSc, Optometrist and Head of the Ocular Health Clinic at the University of Waterloo School of Optometry and Vision Science will inform the audience of recent advances in pharmaceuticals and products to treat dry eye.

Glad to say my eye is never this red

After we hear from Dr. Prokopich the round table discussions occur. 

Our next speaker is Dr. Rami Abo-Shasha. His topic is "Corneal Neuralgia in Sjogren's Syndrome, A Brief Overview." I think we will all learn something new from Dr. Abo-Shasha. This is a problem that I was not previously aware of despite years with Sjogren's. It was also daunting to learn that this is not easily recognized by many doctors, so patients can spend a lot of time looking for a diagnosis.

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

The final speaker of the day is Dr. Leslie Laing, "Saying "Treats" and Other Mouth-Watering Suggestions" who will discuss research findings on the oral aspects of Sjogren's including these areas: oroofacial altered sensation; the effects of the disorder on the quality of life; the outcome of usage of various oral moisturizers and non traditional products such as green tea, licorice root, xylitol,and virgin coconut oil. 

This is the 9th Annual Conference and is for patients and for health care professionals.  You can register at the Sjogren's Society of Canada website

Physician Accredited Conference

The Sjogren’s Society of Canada is pleased to announce that the 2015 National Conference is an Accredited Group Learning Activity (Section 1) as defined by the Maintenance of Certification program of The Royal College of Physicians and Surgeons of Canada.  This activity was approved by the Canadian Rheumatology Association.      7 M.O.C credits.

 THIS CONFERENCE IS INTENDED FOR INTERNISTS, PHYSICIANS, RHEUMATOLOGISTS, DENTISTS,  OPHTHALMOLOGISTS, OTOLARYNGOLOGISTS, OPTOMETRISTS, HYGIENISTS AND PATIENTS

The conference is a CE for dentists, hygienists and healthcare professionals – PACE accredited, 7 CE credits.

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.

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.