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

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 6 - Dr Raed Alhusayen: The Skin

Next at the Sjogren's Conference we heard about another problem area - this one where people seldom take our complaints seriously. After all, they say, "Doesn't everyone have dry skin?"

Dr Raed Alhusayen is a dermatologist at Sunnybrook Health Sciences Center. His areas of interest include autoimmune skin disease and skin lymphoma. His talk was titled "Sjogren's Syndrome and the Skin" so we were on the road to finding out more.

Dr Raed Alhusayen at the round table discussion  (Photo Dona Lankin)

He said "Moisture is the key" and reviewed the main skin manifestations in Sjogren's. They are vasculitis, dry skin and Raynauds. For Raynauds he emphasized the importance of keeping your fingers and toes warm. Two layers is better than one. He also mentioned warm oil massage as being helpful because the oil holds the heat longer. (see ending for details)

Dry skin affects 50% of Sjogren's patients. Here are his tips:

A bath is better than a shower
Lukewarm water
*Non-soap hydrating cleansers (eg. unscented Dove, Cetaphil, Cliniderm, Cera Ve)
Pat gently, don't rub
Apply moisturizing cream immediately after to trap the moisture
Apply moisturizing cream 2 to 3 times per day
Wear cotton clothing

There are 3 types of moisturizer 

1. Oil based which includes ointments. They are water insoluable and more effective
2. Water based products like gels, lotions and creams. They are water soluable and less effective
3. Emulsions which are a mixture. Oil in water or water in oil.

Moisture loss is a real hazard  (Photo Annette McKinnon)

To reduce moisture loss from the skin you can use barrier creams that trap water. They are very effective on dampened skin. This category includes lanolin, mineral oil, lecithin, beeswax and two others new to me called squaline and dimethicone. Barrier creams are the best and petroleum jelly is one that is effective but thick and greasy. You may at some times need medicated cream for better control.

Other ways to preserve moisture are humectants like glycerin, urea, honey, hyaluronic acid and sorbitol that attract water from the dermis or emolliants that repair the skin barrier and replace your natural lipids. Emolliants include ceramide (a natural lipid in the skin), cyclomethicone, jojoba oil, decyl oleate, dimethicone, propylene glycol, shea butter and coconut oil. Now you know what to look for in the ingredient lists. 

Dr. Alhusayen recommended some moisturizerrs: Aveeno, Cetaphil, Dove, Eucerin, Lipicort, Lubriderm, Olay and Epicream. (the last one may be covered by insurance). 
Some of those mentioned are humectants, some are barrier creams and some have the features of both.

In conclusion he emphasized that supportive skin care is simple and yet essential to improving the quality of life in Sjogren's patients

A few more tips 

Warm Oil Massage for Raynauds

Use a natural oil e.g. olive oil. Make sure the heat is low and then rub it on both hands and feet including between the fingers and toes. Put socks and gloves on after this to preserve the warmth.

For skin fissures you can use Crazy Glue.

Facial moisturizers should have an SPF of 30.

 

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.

Eye Care Tips for Computers and Eye Drops

I call my friendly optometrist perfect because he is man of great experience and kindness. He's a person who really is an authority on eyes. My GP, who recommended him, said he gives you "crisp" vision and it's true.

Using my computer for hours at a time was taking a toll on my neck and shoulders. That combined with arthritis was causing a lot of pain. My knowledgeable optometrist suggested that I get a pair of glasses for computer use only - they have only close and mid vision. That stops all the neck adjustments needed to see the screen.

                     Digital image courtesy of the Getty's Open Content Program.

He had very detailed tips for using eye drops.  It goes without saying that you wash your hands and don't touch the opening/dropper. 
Next you look up and pull down the lower eyelid to make a "gutter"
Put the drops in and then shut your eye for 15 to 20 seconds. This stops the tears from running out through your tear ducts because the upper and the lower one meet and seal each other. This helps the tears spread over the eye better.

                Digital image courtesy of the Getty's Open Content Program.

When you use your computer for long periods of time he suggests that you stop every 20 minutes. Shut your eyes and move your eyeballs from side to side. That helps spread the moisture from the corners of your eyes and keeps  you more comfortable.

He also recommends no eye makeup for me because of the Sjogren's Syndrome. A lot of it can end up in your eyes, as I have found out too often. After years with dry and sore eyes I have gathered up all of my eyeliners and plan to use them for an art project before I throw them out. So I guess I give up on smoky eyes.

                          Eyeliner as a halo/My Sainted Smiley      

Interesting fact from Getty.edu   "In Greek thought, large, staring eyes had an apotropaic power, that is, they had the ability to ward off evil and danger." Could that be why large eyes are considered so attractive even now?

Sjogren's Helpers

Every chronic disease comes with its own shelf of products to make your life 'easier'.  With Sjogren's Syndrome you have many parts of the body with symptoms that you have to deal with.

                                     cgphoto.photoshelter.com

There are many strategies that you hear of to help your symptoms in one way of another, very little that helps overall.  I looked around my house and found many standbyes and possibilities.

Salagen (pilocarpine) would be the winner if there was one prescription drug I would not give up. When I don't take it my mouth and throat get unbearably dry and I cough and choke when I swallow. My voice even becomes faint.

You can have a mouthwash made with the active ingredient (pilocarpine) I found it very bitter.

There are also many artificial saliva products available like MoiStir for one. Biotene makes a special dry mouth tooth paste and mouth wash, as well as my stand-by product Oral Balance.

The dental hygienist I see suggested a little olive oil for mouth dryness and a support group member suggested oregano oil. The benefits of using MI Paste and a night guard can be found here.  As you can see Oral Balance and MI Paste get a lot of use in my house. 

I keep the tubes sitting around for a while in case I run out and need to try to get one last bit out of them. Oral Balance is a product I use every night before I go to bed. I hate to wake up and have a dry mouth. It's a gel you put between your teeth and gums before bed.

And this is a product used by singers, one of those tried and true ideas based on a natural product.

In the category of dry eyes some use a personal humidifier at their bedside.  I bought a pair of these goggles called Tranquil Eyes through the Sjogren's Society of Canada and so far used them only on a plane.

I hear that they are also great for sleeping. The spongy part that touches your eyelid can be moistened for extra sleeping comfort. 

Blepharitis is often part of the dry eye equation. I have tried these items to help.  The Blephagel was suggested by my opthalmologist.

And don't forget the nose. I have found the saline spray the most helpful item so far.  I have not wanted to use a neti pot or a nasal rinse but I would if things got worse.

When my nose gets so dry I can feel it in the sinuses and that's when I use saline spray. I find the NeilMed easiest to handle.  It probably works best if you use it every day but it's easy to get tired of working so hard to stay in the same place.  That's what happens when you treat the symptoms and not the underlying causes. A lot of work and no apparent progress, though not getting worse is what we all hope for.

This is far from a complete listing of products and is not meant to be a commercial for items. They were all here in my house even though I use some very infrequently.

For additional information there are tips at Sjogren's Society of Canada, and also at Dr Robert Fox's helpful and comprehensive site called dry .org. That was one of the first resources I used.

It's also a great benefit to attend the Annual Conference of the Sjogren's Society of Canada. The speakers are all at the top in their fields, and there is an hour set aside to give patients in the audience a chance to ask speakers and other volunteer health professionals questions of their own.

Blogging For Health

What do you think the best health strategy would be?  A bowl of fruit daily, a blog post at regular intervals or a multivitamin?

Some may say that's like comparing apples and computers.

    

Fruit courtesy of DH

From what I have been reading you are well advised to turn on the computer and start blogging if you are looking for a novel yet accepted method of dealing with chronic disease.

Creative outlets are distracting in a good way. When you are creating something it is a huge distraction from pain or unpleasant circumstances.  That's why we see people with hand problems adapting in many ways to keep from losing their creative outlets. 

                                                          garlic clove

                                  cactus & mutant bunny all knitted by Cat Beattie

The act of writing a blog is a creative work also. I read at The Seated View last week that Lene researched writing before she started her book and found two things essential to success as a writer. It was the second essential where she cited Dorothy Parker and Stephen King  that made me remember her post and look back as I was struggling with this one. To see the essentials have a look at her post here. 

One thing I have always appreciated in Stephen King is his ability to use details of music, books and surroundings to set his work in a specific time or place.  This is a quality you find in many blogs of all types, not just health blogs.  Here's my idea of a shelf of interesting books. You can see why advice from King might resonate with me.

I was advised to keep a journal as a method of improving my health in a self management course and was very skeptical of the value.  Now I am coming to realize that a blog is a lot like journaling and I can see benefits to continuing to do this. 

This is a quote from the Health Mentor program that I mentioned in this post. "Personal reflection has long been recognized as an important learning tool, where new ideas and concepts can become integrated into future critical thinking and practice." It is a learning tool for others as well as for the blogger, so blogging makes you feel good about sharing hard learned information.

                                         Rosetta Stone

If you are a person who likes to help others or is accustomed to being in what I think of as a "helper profession" it can be very satisfying to share your knowledge. Julia's past career as a nurse helps her to do a great job now at  Reasonably Well in sharing information about Sjogren's Syndrome and other "fun" issues like bursitis.  She's the only person I know who ever made cookies for her infusion nurses - Mousie cookies.

                                    Julia's mousie cookies

And here are some conclusions of a paper by Pamela Ressler, Y. Bradshaw, K. Kwan and Lisa Gualtieri. The data was gathered by online questionnaire and they say it warrants further study but it makes sense to me.

Communicating the Experience of Chronic Pain and Illness Through Blogging

"Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment of online connections with others and increases a sense of purpose to help others in similar situations.
Respondents reported that initiating and maintaining an illness blog resulted in increased connection with others, decreased isolation, and provided an opportunity to tell their illness story. Blogging promoted accountability (to self and others) and created opportunities for making meaning and gaining insights from the experience of illness, which nurtured a sense of purpose and furthered their understanding of their illness."

Sjogren's Makes Life More Complicated

After 20 years with Rheumatoid Arthritis I developed Sjogrens Syndrome.  It is another autoimmune disease most recognizably showing itself as very dry eyes and mouth. It would have been called Secondary Sjogren's in the past because it developed with another autoimmune disease, but the classification criteria has changed recently.

                                                                           

Dryness is a problem

The dryness affects all areas of the body but is far more noticeable and annoying in the eyes and mouth. I use pilocarpine (salagen) in pill form for my dry mouth. It is a prescription drug. Without it my voice starts to diminish and I cough and choke a lot. It is possible to have a compounding pharmacy make up a mouthwash using pilocarpine but it has a very bitter taste.  I also use Biotene Oral Balance at night.

Since the lack of saliva makes your teeth more susceptible to decay it is very important to take care of your teeth well.  I read that using a night guard when you sleep helps with the saliva production because it is a "foreign body" in your mouth, so I got one. I also clench my teeth and get headaches and this helps with dryness and clenching.  You can put a re-mineralizing agent like MI Paste on your teeth under the nightguard to strengthen your teeth.  This. picture shows a whitening tray but it looks like my nightguard

Night Guard for teeth

You can also massage your salivary glands to help stimulate saliva flow. It works best on the large glands near the temporomandibular joint located in front of your ears.

At the last Sjogren's Canada Patient Conference I asked Dr. Yepes if Salagen would keep me from losing function in salivary glands and the answer was no. I did hear that there are usually some salivary glands spared. Up to 50% of your glands can be functional and yet you still feel very dry.

I added this picture because in the past my eyes were so dry that I would look at my computer screen with my eyes half closed because they were so dry and painful.  The dryness also made me go to bed early sometimes because dryness can makes your eyes feel so sore you just can't keep them open comfortably.  I tried punctal plugs (a doctor can plug your tear ducts so the tears stay on the eye) and they helped somewhat. In fact I have had them in my lower tear ducts for the past six years. Then since I was still dry I was able to try Restasis prescription eye drops and they worked for me. That was a break since they don't work for everyone. These drops contain cyclosporin and while they do sting a little, it's worth it for me. I get best results by putting them in my eyes  and then shutting my eyes for a few minutes.

Restasis

I use hormones too.  Dr Ann Parke has spoken at most of the annual conferences of the Sjogren's Society of Canada and is a leading expert on the subject.  She touched on this subject favourably so I am more reassured about the effects of hormones than I would be otherwise. Hormones help with the vaginal dryness and the frequent UTIs.

Sjogren's is different for everyone, but I find it almost a part time job just to care for Sjogren's Syndrome alone.
 
I just read today about acupuncture and Sjogren's in Julia's Reasonably Well blog about Living Well With Sjogrens    She has a great picture of acupuncture points and some useful advice too.

Also, I have found www.dry.org to be a good source of practical info from Dr Robert Fox, who is a leader in the field of Sjogren's Syndrome. If you look for research on PubMed you will find many papers credited to him.