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One of the reasons we started the Not A Dry Eye Foundation was the frustration we felt when confronted by physicians who dismissed our symptoms as being “something we would learn to live with” or “all in our heads.” Not only were we mystified by their (lack of) diagnosis and conclusions, but we were terrified at the prospect of having to live with unbearable eye pain for the rest of our lives, and this without anyone telling us the causes of Dry Eye pain.

When we eventually learned about the ways the disease can quickly escalate and the way it can alter the tissue, secretions, and functioning of various eye structures, we felt vindicated. We knew all along that nothing that we were experiencing was psychological, neurological, or psychosomatic in nature. It was physical – blocked meibomian glands, inadequate aqueous tears, wrinkled conjunctiva, bacteria, twisted lashes, demodex mites, allergies, and more.

Learn about the causes of Dry Eye pain

And there was a lot that could be done about each of these conditions so we wouldn’t have to learn how to live in extreme, debilitating, and unbearable pain for the rest of our lives. There was probing for obstructed meibomian glands, punctal cautery for aqueous deficiency, surgery for the wrinkled conjunctiva, antibiotics for infections, epilation for misdirected lashes, and any number of medications or other treatments for anything and everything else.

But with all of these possible diseases taking hold in the eyes at the same time, is it no wonder that we felt pain? If a single eye lash can stop us cold, why wouldn’t a host of diseases cause unbearable pain in the most sensitive part of the body?

Dubious Causes of Dry Eye Pain

And so we became frustrated once again when we learned that physicians at a prominent teaching hospital and a VA hospital concluded that “neuropathic ocular pain due to Dry Eye is associated with multiple comorbid chronic pain syndromes.”

To us, this is like saying that when you have a diseased finger and are experiencing pain in that finger, the pain is due to some other chronic pain syndrome, not to the disease in your finger.

What?

We wonder if the authors will next conclude that the treatment should be Lyrica or some other anesthetizing pain medication? Or maybe serum tears? Or scleral lenses?

Maybe.

But we think there’s a much better approach.

It has to do first with correct and comprehensive diagnosis, the most important step in alleviating symptoms, and then targeted therapy for each co-morbidity — the approach taken by our doctor, Dr. Steven Maskin.

And so we conclude by citing a different study by some of the same physicians at the same teaching and VA hospitals who concluded that ocular pain associated with Dry Eye may be due to conjunctivochalasis, and that patients should be screened for the disease.

Now we’re getting somewhere. That’s the spirit. Happy New Year!

References

Neuropathic ocular pain due to dry eye is associated with multiple comorbid chronic pain syndromes
Galor A, Covington D, Levitt AE, McManus KT, Seiden B, Felix ER, Kalangara J, Feuer W, Patin DJ, Martin ER, Sarantopoulos KD, Levitt RC.
The journal of pain : official journal of the American Pain Society
2015 Nov 19. pii: S1526-5900(15)00944-X. doi: 10.1016/j.jpain.2015.10.019. [Epub ahead of print]
View the full report

The impact of conjunctivochalasis on dry eye symptoms and signs
Chhadva P, Alexander A, McClellan AL, McManus KT, Seiden B, Galor A.
Investigative Ophthalmology and Visual Science
2015 May 1;56(5):2867-71. doi: 10.1167/iovs.14-16337.
View the full report

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Other results of the Expert Opinion study were also indicative of the insufficient  Dry Eye treatment so many have received.

According to the study:

respondents reported wanting to prescribe cyclosporine A 0.05 % (52/79, 66 %), autologous serum eye drops (39/73, 53 %), resolvin E1 (omega 3 fatty acid) eye drops (31/72, 43 %), and 3 %  Diquafosol  (31/75, 41 %) more often.

Here again we see Restasis, which is effective for about 10% of patients, and serum tears rise to the top of the list.

Almost half were interested in prescribing resolvin E1, presumably due to its anti-inflammatory properties. But even resolvin E1 isn’t likely to address the underlying cause of inflammation.

Just over 30% wanted to prescribe diquafosol. A 2012 double blind study compared diquafosol 3% to sodium hyaluronate 0.1%.  The authors of that study reported that

the incidence of adverse events was 26.4% and 18.9% in the diquafosol and sodium hyaluronate groups, respectively, with no significant difference.

31% of the Expert Opinion participants said they wanted to prescribe diquafosol more often.

In the spirit of first do no harm wouldn’t it be better to first know who might suffer adverse events before prescribing diquafosol in order to prevent them from happening in the first place?

References

Expert opinion in the management of aqueous deficient Dry Eye Disease (DED)
A Sy; K. S. O’Brien; M. P. Liu; P. A. Cuddapah; N. R. Acharya; T. M. Lietman; J. Rose-Nussbaumer
BMC Ophthalmology
2015;15(133)
View the full report

A randomised, double-masked comparison study of diquafosol versus sodium hyaluronate ophthalmic solutions in Dry Eye patients
E. Takamura; K. Tsubota; H. Watanabe; Y. Ohashi
The British Journal of Ophthalmology
2012;96(10):1310-1315. doi: 10.1136/bjophthalmol-2011-301448
View the full report

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A recent study published on BioMed Central may explain why Dry Eye sufferers often receive treatments that are ineffective or inadequate.

For the study, authors surveyed ophthalmologists to “identify the most common treatments used among specialists” for Dry Eye.

Not surprisingly, one of the most commonly prescribed treatments for Dry Eye was topical cyclosporine A (CSA), the active ingredient in Restasis. According to the study, of the 104 specialists surveyed 71, or a full 68%, said they prescribe CSA.

The reliance on Restasis, a topical drop that benefits only about 10% of users, may alone explain why so many Dry Eye sufferers continue to complain of symptoms after starting treatment.

A clue to understanding why a medication that is effective only 10% of the time is among the most commonly prescribed treatments for Dry Eye lies in understanding the mechanisms of disease management in populations. For example, if a drug that benefits 10% of those who use it is given to 100 million people, 10 million might benefit from it. That’s a lot of people. And so Restasis now enjoys the number one position in commonly prescribed Dry Eye treatments despite its limited efficacy, while profits to the drug maker accrue.

Other Commonly Prescribed Treatments for Dry Eye

Next on the list is fluorometholone, a steroid marketed under many brand names that is most often prescribed after laser refractive surgery. Which then begs the question — is this result simply an indication of the frequency of laser refractive surgery, a common cause of both transient and chronic Dry Eye?

Loteprednol etabonate, brand name Lotemax, is another steroid. Although effective in treating inflammation, long-term steroid use is usually not recommended.

Surprisingly autologous serum tears made it to the number 4 slot, a ranking the authors suggest may be due to the number of responders from large university centers. Although serum tears too have limited efficacy, even if they were more effective, they are still virtually unavailable in most ophthalmology and optometry practices.

Lubricating drops universally prescribed for Dry Eye were excluded from the survey.

The authors suggest that this study will help to inform future studies.

We hope that these future studies will examine not only which treatments address symptoms and signs of Dry Eye but also the effectiveness of these treatments for specific co-morbidities e.g. obstructive meibomian gland dysfunction (o-MGD), non-Sjogren’s aqueous deficiency, or many others, rather than the less specific Dry Eye Syndrome or blepharitis.

To be continued….

Reference

Expert Opinion in the Management of Aqueous Deficient Dry Eye Disease (DED)
A. Sy; K. S. O’Brien; M. P. Liu; P. A. Cuddapah; N. R. Acharya; T. M. Lietman; J. Rose-Nussbaumer
BMC Ophthalmology
2015;15(133)
View the full report

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If you’re thinking about making a tax-deductible donation to a charity this holiday season, please consider donating to Not A Dry Eye Foundation.

Not A Dry Eye is dedicated to promoting awareness of Dry Eye Syndrome. One way we hope to do this is by improving understanding of the disease and the debilitating effects symptoms can have on a sufferer’s day to day life.

Please join us in the fight against Dry Eye Syndrome with your tax-deducitble donation.

And go to All About Dry Eye/Symptoms to learn how the disease can impact quality of life.

Subscribe to our blog to keep up with Not A Dry Eye.

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Many of you have expressed interest in participating in our on-line, audio Patient Forums. We want to assure you that these will be launched soon. We are in the process of selecting a service provider — reviewing features, pricing, and support plans. As soon as we select a vendor, we will launch the first support group forum.

In the mean time, if you have any questions or suggestions about the Patient Forums or the technology that will be used, please feel free to contact us at contact@notadryeye.org

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After months of preparation, the Not A Dry Eye Foundation is proudly launching its website and proceeding with its mission — promoting awareness of Dry Eye Syndrome.

The website will help Dry Eye sufferers around the world better understand their symptoms and conditions, while providing doctors, and other health care providers, information about diagnosis and treatment options.

Too many Dry Eye sufferers see too many doctors before they find the help they need, and this is the underlying motivation behind the Not A Dry Eye Foundation. Each of us lived through this harrowing experience, vowing that one day we would help others like ourselves.

And with the launch of this website, we are fulfilling our promise. Because we don’t think it’s OK for doctors to say, “you’ll learn to live with it” or “at least you don’t have cancer” when they’re faced with a difficult Dry Eye case. There are many different options now that doctors, and their patients, need to know about, both for diagnosis and treatment. And they can learn about these here.

Promoting Awareness of Dry Eye Syndrome

We’re also pleased that the website is designed specifically for people who suffer from Dry Eye, many of whom, like us, find it painful or uncomfortable to read or look at a computer screen. Clicking the “Listen” button at the top of each page lets users listen to the words on that page instead of reading, giving eyes a well-needed break.

We invite you to visit our website and learn all about Dry Eye Syndrome. And we hope you will come back often to learn about upcoming events, like virtual support groups and Ask a Doctor webinars, all of which will be in audio, minimizing the time you will spend looking at a computer screen.

In our hearts we believe that:

With knowledge there is power.

With support there is courage.

With hope there is healing.

Please join us in our journey to healing.


The founding board members of the Not A Dry Eye Foundation.

The Not A Dry Eye Foundation is a patient-driven 501(c)3 non-profit organization dedicated to promoting awareness of Dry Eye Syndrome.