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.

My Sjogren's Syndrome Onset Story

Thinking back, I remember when I started to have eye problems about 10 years ago. When I got home from work my eyes felt so sore that I would have to lie down and keep my eyes shut for 20 to 30 minutes. When I opened them they would feel good for a while but overall just kept getting worse. 

Eyes half shut

Sunlight made me squint till my eyes were almost shut, and I started to find myself was sitting in front of my computer screen with my eyes half shut so that I could manage to keep on reading. This was a poor solution so I started to go to bed really early since my eyes hurt when I watched TV, read or used my computer. With RA (Rheumatoid Arthritis) that meant almost all of the things I did outside of work were causing problems.

Working was also getting difficult. I heard that daylight bulbs in office fixtures were better for eyes, so I had my neon lights changed. The air conditioning was a problem because of the airflow so I turned off the AC outlet over my desk.

It was getting frustrating that all these changes actually made no lasting difference. Finally I went to see my trusted optometrist, who told me I had dry eye. He gave me eye drops but using them as often as I needed to was a nuisance, and did not help enough.

Dry eye and dry mouth

It will surprise no one on social media that I started to google symptoms of health problems connected with dry eye, and when I found the term Sjogren's Syndrome it seemed that I had a match, especially when I found that 25% or more of people with RA developed Sjogren's Syndrome.

The Sjogren's community that my searches led me to is called Sjogren's World. It is a large and strong community with 'expert patients' as moderators. There must be 250,000 posts and replies and through searching and asking questions I soon had a lot of answers.

Finally I was able to see my rheumatologist. When I asked him if I might have Sjogren's, I think he said that half of his patients had Sjogren's. There's a clinic where I live that has a very long waiting list; He said that he could send me there if I wanted to see a lot of doctors, but put that way, I did not want to sound needy so I said no.

When I asked if I could try a prescription drug to stimulate more saliva because of dry mouth and choking he agreed it was worth a try, and I got a referral to an opthalmologist as well. Through reading and talking to a friend I had the name of a doctor who specializes in dry eye, so that's the doctor who finally helped me with the eye problems.

Eye drops and gels. Ready for dryness!

That was actually a fast diagnosis. It was less than a year after I noticed the problem that I had a name for it. Typically people see 3 doctors and it takes 2 1/2 years to find out you have it. 

I've written many posts about Sjogren's Syndrome. I am now a board member of The Sjogren's Society of Canada and attend the conferences regularly. This post titled "immune System Gone Wild" was among the firstof the series and has some hints about management if you want to know more. Most of the treatments are not cures; managing symptoms is often the only choice.

There are a few prescription medications which help, but it's like other autoimmune diseases and has no cure.

Wikimedia Commons Rue des Pyrenees

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

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.

The "Old Bags" Event for Sjogrens

There are some talented and generous women in the Hamilton/Burlington area who call themselves "The Blossom Group." They help deserving organizations and have raised hundreds of thousands of dollars over the years for non-profits. Their hallmark is amazing creativity and an ability to get support from the community for the events they plan. 

I heard of one event that was attended by some older ladies who are still talking about the dashing and generous firemen who escorted them to their tables. 

                                Image from WikimediaCommons Saperaud

For this new project for the Sjogren's Society of Canada they are calling themselves "The BAGettes."  The event they have planned is "The Old Bags Cocktail Party and Fashion Show" and it's occurring on Thursday September 26 in Hamilton. It sounds like a major source of good laughs to me.

Lynn Spence from CityLine is doing the Fashion Show with smashing models. Deirdre Pike is the MC for the evening. Food, wine and door prizes are included, and 20 really high end bags will be auctioned off.  There will also be 200 bags that will be sold for a modest price. The wonderful firemen are again donating their services. You can't take them home but maybe a picture?

                                            Lynn Spence

This is a major event for the Sjogren's Society to help fund research and I can't imagine a better group of organizers.  The tickets are $75 and you will receive a tax receipt for a large portion of the cost since so much of it is a donation.

For Tickets: Phone 905-679-1809 or go on-line (www.sjogrenscanada.org) and pay through pay-pal.  See you on the 26^th in Hamilton!

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

The Sjogren's Society of Canada had the 7th Annual National Conference in May this year. It was a learning experience that Sjogren's patients look forward to all year.  For the first time this year the conference was also an Accredited Group Learning Activity for doctors and provided Continuing Education credit for dentists.

We started the day with Dr Arthur Bookman giving us an overview of the criteria for the diagnosis of Sjogren's Syndrome. He described it as an immunological storm.  Dr Bookman is also to thank for the inspired naming of the conference. 

He told us that hypertrophied salivary glands are often seen in Sjogren's.  If the salivary ducts are injected with a tracer dye you can see damage and abnormal arborization.  

He also talked about the length of time it takes to get a diagnosis of Sjogren's Syndrome based on experiences of people who attended the multidisciplinary clinic at Toronto Western Hospital. It takes 27 to 31 months for the diagnosis and from 2.9 to 3.2 different doctors. This leads to patients being unhappy with the medical profession.  On the Devins Illness Intrusiveness Scale  Sjogren's ranks very near Multiple Sclerosis.

ScienceDirect.com

He also said that systemic treatments such as prednisone, hydroxychloroquine, immunosuppressants and TNF inhibitors are ineffective, though Rituximab is sometimes effective. It has been seen to improve dry mouth/salivary symptoms and dry eye and fatigue. Future treatments may include Benlysta and allogenic mesenchymal stem cell transplantation (Sun, Nanjing abstract 2557, ACR 2012)

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.