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: 9th Annual Sjogren's Society of Canada Conference. Dr Rookaya Mather

The second presentation at the Conference was from Dr. Rookaya Mather. She is Associate Professor of Ophthalmology at the Ivey Eye Institute at the University of Western Ontario, specializing in Cornea and External Eye Disease, and a long time member of the Medical Advisory Board of the Sjogren's Society of Canada. 

She spoke about Understanding and Managing Dry Eye Disease, and how it affects those who live with it every day. Dry Eye Disease (DED) is the most common reason for people over the age of 40 to visit an eye care professional and may be associated with morbidity and reduced quality of life.  It is generally underdiagnosed and undertreated.

It is also a clinical challenge for the eye care professional since it is time-consuming to diagnose and manage, it is usually not curable so the patient is frustrated, there are numerous causes and exacerbating factors and the patient reported symptoms do not always correspond to the clinical signs.

Here are the symptoms of dry eye:
Burning
Foreign body sensation
Itching
Redness
Soreness
Dryness
Gritty or sandy sensation
Light sensitivity
Sticky or crusted lashes
Fluctuating or transient blurred vision

Dr Mather laid out the steps we need to take to be more comfortable, despite having dry eyes:

1. Tear Supplementation

2. Control of Inflammation using topical corticosteroids or systemic          immunosuppressants

3. Reduce loss of moisture through evaporation by modifying environment and   behaviour

4. Support meibomian gland function

5. Nutritional support

6. Enhance tear production: Salagen, Restasis

Dr Mather gave us advice on how to accomplish these goals, and also sympathized about the costs of the products we need. If a product has no DIN (drug identification number issued by Health Canada) it is not covered by any type of insurance. 

She cautioned us to think about blinking: Remind yourself to blink more often and try blinking up to 3 times in a row. Also, read differently. Use artificial tears before you sit down to read or use your computer.

Try to stay ahead of the dryness to make your quality of life better. You need to intervene before your eyes are in jeopardy - it's possible not to feel the effects of dryness. With uncontrolled inflammation you can develop corneal perforation.

One piece of advice for people with meibomian gland dysfunction was to use hot soaks and then wash the eye area with Spectrogel or Cetaphil.

People over 65 are more likely to report having dry eye. Since this is an inflammatory disease there is no easy cure. Anything in front of the eyes is going to help to reduce airflow across the eye surface so try to avoid airflow, especially when it is hot and dry. 

You can find a wide variety of eye protection from moisture chamber glasses to Panoptx which is wraparound eyewear  and other alternatives. Fortunately regular drugstore wraparound sunglasses which fit over my prescription glasses are enough for me so far.

Moisture chamber glasses to reduce evaporation

Sometimes you need to work on your problems related to Sjogren's Syndrome a few steps at a time. Dr Mather suggested we take our top 3 problems to the doctor each time we have a visit and work on gradually improving our situation, step by step.

You need to own your condition, so that you know how to help yourself. With a chronic disease like Sjogren's, education is particularly important to empower yourself and protect your eyes. That is one of the reasons I love to attend conferences - to learn more from experts and also from other patients I meet there.

Taking Control Part 4 - Sjogren's Conference - Dr. Rookaya Mather: Dry Eye

Dr Rookaya Mather is Associate Professor of Opthalmology at the Ivey Eye Institute at the University of Western Ontario and Department of Opthalmology and a researcher specializing in Cornea and External Eye Disease in London Ontario.

She chose Sjogren's Syndrome and Tear Film Dysfunction as her topic. Dr. Mather defined dry eye as a multifactorial disease of the tears and ocular surface that results in discomfort, visual disturbance and tear film instability with potential damage to the ocular surface. It is accompanied by increased osmolarity of the tear film and inflammation of the ocular surface. This is the definition of dry eye from the International Dry Eye Workshop (DEWS)

This can be very disruptive to your life. It has an effect on your quality of life that is similar to moderate angina. It's possible for dry eye to be caused by drugs or a serious lack of Omega-3 as well as by Sjogren's Syndrome.

Nitro for angina

In Sjogren's patients with severe dry eye researchers have seen on biopsy that 50% of the glandular cells are still present. This emphasizes the importance of immune factors in inducing glandular dysfunction. 

Another contributing cause for dry eye can be Meibomian Gland Dysfunction (MGD). With Sjogren's there is a decrease in expressibility that leaves the lipid layer deficient and lets tear evaporation increase. When this happens your tears become very concentrated. This promotes inflammation. For some people warm compresses and eyelid massage help with MGD.

You may also see redness on the eyelid margin. This is a sign of Ocular Rosacea. The inflammation on the ocular surface is thought to be mediated primarily by CD4 cells.

You need tear film on your cornea at all times for protection or your corneas may break down. When you use eye drops you should avoid drops containing preservatives.  BAK is the worst one and it is also found in glaucoma drops. Autologous serum tears are the closest to natural tears.

She's got Botticelli eyes

As your eyes become more dry, ocular findings worsen. There are some types of eye wear that help reduce the flow of air over the eye that preserve the tear film.  These include wraparound glasses and cycling shields, Panoptx, plano glasses or the scleral contact lens. You need to be especially careful to moisturize at night since tear production drops then.

Dr Mather ended with more good advice. Number one was "Be proactive, not reactive." Sticking to a daily care routine is essential. When you read close your eyes after each page for a few seconds more than a blink.

This is the comprehensive strategy to manage dry eye in 5 points:
1. Tear supplementation
2. Control of inflammation
3. Reduce evaporative loss
4. Support meibomian gland function
5. Prevent disease progression

Omega-3 capsules with fish pictures

Lifestyle factors can help. She suggested 2000mg of fish oil daily, use of lubricating eye drops, lid hygiene, warm compresses, possibly punctal plugs. Also consider flaxseed oil . Another idea that was new to me involved rolling a small bottle (like a pill bottle) full of warm water over the eye for a warm massage.

You can find more information about dry eye here at Dr R. Fox's site and more info on compresses for dry eye at this site which I found through dry.org. It also mentions eyelid massage.

Part 6. Immune System Gone Wild. Dr Miriam Grushka and Dr Lisa Prokopich

Dr Miriam Grushka, who is an Oral Medicine and Orofacial pain specialist, has been a long time supporter of the Sjogren's Society of Canada. Her topic was Taste and Smell In Sjogren's Syndrome.

I learned that the loss of taste that some experience with Sjogren's affects your retronasal sense of smell also. There is not much research in this area.  Yeast infections cause changes to the tongue as well as the mouth. When this infection is treated successfully, even if your tastebuds are gone they are likely to return.

Dr Grushka is also the go-to expert for burning mouth syndrome which sometimes occurs in Sjogren's.


Dr Lisa Prokopich,OD, M.Sc. spoke about "Artificial Tear Products – How To Choose?" She is Head of the Ocular Health Clinic at the University of Waterloo.

Dry eye can be episodic or chronic, and the tear supplement composition makes a difference in effectiveness. It is not really accurate to call them tears; they are really lubricants. They can help to heal the ocular surface. All are approved as over the counter (OTC) products. This is not based on clinical efficacy.

If you use artificial tears more the four times a day preservatives can be a problem. The most common one is BAK (benzalkinium chloride) and sensitivities to it are common. Some newer preservatives are less toxic.

I learned a  lot about tears, but am still not positive which is the best for me. I hear it's best not to mix brands. Here are some other comments that may be helpful.

Cellulose polymers as in Refresh and Theratears are beneficial.
Systane Ultra does help to heal your cornea. 
Systane Balance is good for meibomian gland dysfunction.

                                                                  Barbie's eye
Ointment gives more comfort than it does healing. The brands available contain mineral oil and petrolatum and are helpful to use at night.

Tears are hypertonic, a hypotonic tear is preferred. Hypotonic solutions have low osmolarity -Theratears is lowest, Hyptears, Refresh Optiva and Optive Advanced are also low. Hypertonic solutions are not for dry eyes, they can make it worse. With dry eyes we are better off with a hypotonic solution like Theratears.

She also gave us some web resources to use.

Sjogren's Society

The Ocular Surface (now owned by Elsevier- only abstracts  free)

Eye Tube OD

Dry Eye Zone  Interesting site

Links to past Sjogren’s posts:

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