Dates

April 25 to June 9, 2019

Participants

462

Results

Rebecca's summary

Of the 462 people who responded:

• 86% of participants have moderate to severe dry eye, which means they would probably be interested in ways to reduce their risks of making it worse. 
• 38% believe they already know enough to educate their family and friends, which is terrific. 

On the other hand, there are clearly some significant knowledge gaps, and identifying gaps is very helpful in finding ways we can begin to focus in improving awareness. 

For example:

• 44% believe preservatives can make dry eye worse, but only 1 in 5 know that some preservatives are worse than others.
• More than half have never used a preservative-free multi-dose bottle (e.g. Oasis Tears, Clear Eyes Pure Relief, FreshKote) - yet these bottles are a great way to combine preservative-free with convenience and economy.
• Only 1 in 5 users of prescription drops have discussed preservatives with their eye doctor. We need to have more conversations!
• Nearly 1 in 5 use preserved lubricant drops at least once daily. Which may be fine, but... do you know which preservative is in your drops and how it rates?
• Nearly 1 in 5 use over-the-counter allergy and/or redness relievers at least once a day... but did you know that almost all of those contain a relatively high concentration of BAK?

Quick note about the survey

This survey was not scientific by any stretch of the imagination. It was designed and conducted on an  informal basis simply to try to pick up on potentially important trends and to help us better understand where the information gaps lie and which questions we need to be asking - asking ourselves, asking our doctors, asking the industry, and asking researchers to study.

About the survey participants

How dry are we?

How much do we know about preservatives?

Awareness of preservatives in over-the-counter lubricant eye drops

• 18% of participants use preserved lubricant drops at least once a day.
• While 87% have used single-use preservative-free vials, 52% have never used a preservative-free lubricant drop that comes in a bottle.
• Only 30% cite their doctor’s advice as a reason they use preservative-free eye drops.
• 19% believe that some preservatives are worse than others.*
• 44% believe preservatives are toxic and could make dry eyes worse
• 25% believe that they are allergic to preservatives or that preservatives bother their eyes

* It’s true, and if you are among the 20% using preserved drops, it’s also important to know.

Awareness of preservatives in over-the-counter allergy and redness reliever drops

• More than half (52.4%) of participants never use these types of eye drops.
• 8% believe it’s reasonable to assume that eye drops sold over the counter are safe.
• BUT… more than 18% use over-the counter allergy and/or redness relievers one or more times per day.**
• Only one in four (23.4%) always involve their doctor in their choice of these types of over-the-counter eye drops.

** It is worth noting that almost all products on the market in these two categories are preserved with benzalkonium chloride.

Awareness of preservatives in prescription eye drops

Amongst those of us (58%) who are using at least one prescription eye drop,

• 79% have NOT discussed preservative risks with our eye doctor
• 63% are using one or more that are preservative-free
• 22% are using drops that may have a preservative (i.e. they don’t know)
• 20% are using drops that they know are unavailable preservative-free
• 11% are using compounded preservative-free  drops

Comments

This survey generated a great deal of comments and questions. Below are highlights of the responses, with Rebecca's responses and comments in italics. 

• Questions and information gaps

  • “What’s wrong with using preservatives In drops?” >> Preservatives, pretty much by definition, are toxic. How much harm they can cause depends on the type of preservative, how much of it there is in the drop, and how frequently the drop is used. One preservative that is very, very well known to cause or exacerbate dry eye is benzalkonium chloride, so we have been trying to raise awareness about it. But most doctors agree that for people who, for example, use lubricant eye drops frequently, they should be using eye drops that do not contain preservatives.

  • “I learned to avoid TheraTears because it (presumably its preservative) made my eyes very inflamed and itchy. The preservative in Refresh tears does not bother me that I can tell. I seem to be allergic to Restasis and Azasite, which is a shame since they both seemed to work well for me at first. I wonder if that's a problem related to preservatives.” >> TheraTears is available both preserved and preservative-free. Refresh is available preservative-free under the name Refresh Plus. Restasis is preservative-free. Azasite is preserved with BAK. It’s worth noting that allergic reactions and ingredient sensitivities are two very different things (though either may be a reason not to use something). These are all great questions to take up with your eye doctor.

  • “My eyes are very sensitive and preservatives do irritate them. I am currently using Dr. Berne's 5% MSM drops and they have worked well. I previously used Refresh Plus preservative free drops in the little vials, but they contain boric acid, which is a carcinogen (why are they called preservative free?), and they do irritate my eyes if I use them more than a couple times a day. I understand that the MSM drops are being discontinued. I would love to find some truly preservative free, healthy, and effective eye drops. Any suggestions?” >> Boric acid is used in tiny amounts very, very commonly as a pH buffer in a great many eye drops of all kinds. It’s not used as a preservative. Only mentioning because it can be very difficult, if you have an ingredient sensitivity, to know what ingredient it is. I know many people who believe they have developed a sensitivity to the polymer, carboxymethylcellulose, that is in Refresh Plus and many other lubricant drops. Can’t comment on the MSM drops but maybe someone else can!

  • “I suffered a lot for years because I didn’t know about allergy drops drying my eyes and that preservatives were making my eyes worse.” >>Yes… allergy drops are a really big concern of mine, especially the over-the-counter ones, because people don’t really have any way of knowing.

  • “I don't like to waste the plastic packaging in individual vials but seems to be only solution” >> There are several preservative-free drops available in specially designed preservative-free bottles. This is a growing trend and a good option for avoiding waste.

  • “Are there any gels that are preservative free? “ Nope. Not true gels. The only true gels are Genteal and Systane gels, and they are “preservative-free in the eye” - they have sodium perborate, which is supposed to dissipate on contact with the eye.

• Glaucoma meds

  • “I use latanoprost for glaucoma (with which I was diagnosed soon after having lasik which immediately gave me severe dry eye). Dr. says that going to preservative-free won't make much difference since it's only one drop per day at bedtime. I'm considering trying stopping the latanoprost in the eye that's much less damaged, to see if it starts to feel any differently.” >> I assume you’ll involve your doctor in that process if you are going to take a break from the latanoprost. But fyi, here is a study on a glaucoma medication (tafluprost) normally prescribed for use just once a day. They compared preserved to unpreserved. Once a day really is enough to make a difference.

  • “Glaucoma eye drops with preservatives are so common what are some without?” >> Check out the glaucoma section of our list here - below the BAK-preserved ones, there are some options with other preservatives and preservative-free. Timoptic in Ocudose, Cosopt PF, Zioptan are preservative-free. Travatan Z and Alphagan P have less toxic preservatives.

• Not sure where your drops fit in to the survey? For clarification:

  • Genteal or Systane gel? These, as well as some others, contain sodium perborate, a lower-risk preservative which is believed to be all or mostly neutralized upon contact with the eye. These products are important to many severe dry eye patients because they are not greasy like ointments but are more viscous than drops, and they are not available preservative-free. We probably don’t know enough about whether they really are preservative-free “in the eye”.

  • “What about Restasis?” >> This is a preservative-free prescription eye drop.

  • Autologous serum eye drops (mentioned by many people) >> These are prescription eye drops, compounded, and almost always preservative-free.

• Specific risks of preservatives?

  • “My understanding is that long term use of preservatives causes eye pressure?” >> You may be thinking of corticosteroids which can cause increased intra-ocular pressure.

• Compounded PF options awareness?

  • “I have to use Pred-Forte daily, my anti-rejection drops for my cornea transplants. I don't a choice in the matter.” >> You may not be aware that you can get prednisolone acetate compounded preservative-free. Example. I’m not saying it’s a suitable alternative for them, of course, but that a conversation with the doctor may be worth it.

• Experiences with doctors who do not seem concerned about dry eye risks from preservatives?

  • “My eye doctor consistently recommends eye drops with preservatives and does not suggest non preservative eye drops when I remind him I can't use drops with preservatives.” >> Have you considering finding another doctor?

  • “In the past, I used a drop recommended by a doctor that had a "mild preservative". I never liked how it made my eyes feel, but was told there was nothing bad in the drops and to keep using them. After awhile, I stopped using them. Years later, another doctor recommended the PF version. It made a world of difference. So frustrating to have wasted so much time using drops that were not helping and to have a doctor that wouldn't listen.”

  • “For years my doctors insisted I use eye drops containing BAK for my dry eye and glaucoma (at the time I knew nothing about preservatives). My eyes were red, itchy, burning and had stabbing pains in them. I was told by my doctors I had to use these drugs because there weren't any others available. After reading your website I finally went off the over-the-counter drops and the perscription drops they were telling me I HAD to use. My eyes immediately cleared up! I left Kaiser and I got a new doctor; he has been fantastic and under his care my eyes are clear and symptom free! He treated my glaucoma with eye surgeries so I don't need the drops and I use preservative free artificial tears to treat my dry eye! You web site armed me with the information I needed to take control of my eyesight...THANK YOU!” >> Hurray and YW! Good for you for educating yourself and advocating for your needs!

  • “I’ve learned so more from your educational posts than from my eye dr” >> Eeek!

  • “What I find incredible is that BAK is still used in drops AND my Dr. has never cautioned me about the toxicity of BAK. It's as if Dr's don't want to deal with it. I have been seeing him for 4 years, many treatments and prescriptions for prednisolone, lotemax, bepreve, epinastine, FML, lotemax gel. When I told him I was patch tested as sensitive to BAK it was as if he didn't hear me. He never commented on it. BAK irritates my eyes and when I have to use the drops I never complete the full course. I could pin him down about it but there are too many other issues to talk about in a short office visit so I do what I have to do and he does what he has to. I like him.”

  • “I have been see ophthalmologists annually for over 60 years, including for RK, cataract and corneal transplant surgery, and never had one mention preservatives in eyedrops. Seems like they should.”

• But then, there are others that are doing a great job:

  • “I never realized preservatives in eye drops were a problem until just recently. My eye dr told me to stop taking over the county lubricating drops that contain preservatives” >> Hurray!

  • “No I don't have any concerns or questions at this time, I have always asked my eye Dr. and she has always went above and beyond to inform me of everything I have asked about my eye care. Dr. Lisa has always taken great care of my eyes.” >> Hurray again!

  • “My doctor told me anytime I am using something long term (eye drops, eye ointments) I should only use preservative free.” Take a bow, dr!

• For others, I don’t want to leap to conclusions but:

  • “I have been see ophthalmologists annually for over 60 years, including for RK, cataract and corneal transplant surgery, and never had one mention preservatives in eyedrops. Seems like they should.” >> Interesting! For most people, I would not expect the question of preservatives to come up in the context of prescription medications because most people aren’t ever on prescription eyedrops for all that long (with the exception of glaucoma patients), even post surgically. But in the context of dry eye, and since you completed this survey I assume you do have dry eye, it is my opinion that the question of preservatives is relevant to all of us regardless of severity, because most people diagnosed with dry eye use artificial tears with some regularity. If you don’t, and your doctor knows you don’t, then they might have no reason to mention it.

• Being smart about risks vs benefits

  • “If some eye drops were not available without preservatives, but still help my eyes, I would use them, only not as often as those that are preservative free and for a limited amount of time.” >> I like this perspective, and I think that we have bear the reverse in mind: Just because a drop is preservative-free doesn’t mean it’s any good. PF is not a virtue, just the absence of a vice.

  • “The drops that I use now (Bepreve) have less BAK (0.005%) than my previous drops, something that I'm aware of because of your newsletter.  :)”

  • “What I was told is that eye drops w/preservatives are OK up to 4x a day. I just happened to find that the best drop for me was a single use preservative free one, not that I specifically sought it out.”

  • “i love genteal products. preservative residue if any for the bottle itself doesn't bother me. Due to my rheumatoid arthritis (cause of dryness syndrome)  single use vials too hard to both open and squeeze. “

• Labeling concerns

  • “My concern/complaint is with products that do not specifically identify the preservative in the list of ingredients on the label. Example: Rohto Dry-Aid: Povidone 0.68%, Propylene glycol 0.3%; boric acid, calcium chloride, edetate disodium, magnesium sulfate, menthol, PEG-10 castor oil, poloxamer 407, polyaminopropyl biguanide, polyoxyl 40 stearate, purified water, sesame oil, sodium borate. (After Internet searching, I learned polyaminopropyl biguanide is a preservative.)” >> Yeah… I absolutely agree.

• PF versions of preserved drops (?)

  • “I’d like pressure put on manufacturer of Lumify to sell preservative-free version” >> YES!

  • “I use mostly preservative-free drops. I have a new eyedrop prescription which has BAK, & I don’t think my doctor knew this, as she does not like BAK. I will request a preservative-free version of this eyedrop when refilling.” >> Good going!

  • “Pazeo/Pataday/Patanol for allergies has BAK but seems to help w redness allergy symptoms, quit or just limit them, are there anti H drops w/o BAK?” Not yet! However, Eton Pharma recently sold Bausch & Lomb the rights to a PF allergy drop which I hope will be marketed in due course! Thus far, its name has been EM-100.

• The economics… and insurance

  • “I take issue with the expense of our throwing away most of the contents of each vial of eye drops.  I did an analysis of the cost per dose, using preservative-free drops in vials, where 1 vial contains 1ml and 1ml yields 20 drops. Assumed using each vial for 2 drops/dose, 2 eyes/dose (applying to both eyes, each dose), 2 doses/day then discard vial ==> 8 drops/vial used. Thus [20 drops - 8 drops] = 12 drops/vial are thrown away. 60% wasted. Suppose I am buying drops for $9.94 for a pkg of 30 vials, and using uniformly each day & month. The cost per year is $477.12. ... But I am throwing away 12 of each 20 drops... Does this make sense? You could play with my variables, but the general result is still the same: It doesn't make good economic sense.  What am I missing? Thanks.”

    • What are you missing? Well, in one sense nothing - nobody is going to argue for the economic good sense of preservative free vials. We’re talking about concerns about a medical risk here. Preservative-free will ALWAYS cost more because of the higher technology involved in the packaging process, and single-use vials will ALWAYS involve wastage of some kind. But here’s some food for thought: First, your math is based on bottles, not vials. (I see those numbers on webmd.) Vials contain anywhere from 0.3 to 0.9mL, with most of the popular brands on the low end. Second, most people re-cap and re-use them throughout the day. Third, you do not need a large drop, because your eyes can only hold less than a drop and the rest drains out… so applying small drops helps to conserve. Fourth, if you can’t use an entire vial in one day, but want to avoid preservative risks, look for preservative-free bottles. There are currently only a few brands on the US market (Oasis, FreshKote, Retaine HPMC, Nanotears) but more will come.

  • “My insurance disapproved my use of Restasis after several years of using it.” >> SIGH!

  • “My insurance does not cover the name brand antibiotic drops that do not irritate eyes. Generic ones damage my cornea most likely due to the type of preservatives used.” >> DOUBLE SIGH!

  • “Dexamethasone eye drops - I use them as little as possible prn and they are preserved with BAK. There is a PF drop - way too expensive”

• Even eyewash may have BAK

  • “I use Restasis. I assume that it is preservative free as you are only supposed to use it one time and then dispose of the vial. By the way, not only do some Bausch & Lomb Eyedrops contain preservatives, after seeing the warning that you posted about Bausch & Lomb, I checked the eye flush that I use every other day after doing my eye presses , and that has BAK in it! I never realized that! Not sure if I will continue to use that or not. I feel like if I’m only using it once every two days, that can’t be too bad, right? It gets all the gunk out of my eyes after I do my eye presses because I have MGD.” >> Yes unfortunately many standard eyewashes have BAK. I’d look for a preservative-free one. Personally I use preservative-free saline as an eyewash.

• Personal experiences and opinions about preservatives

  • “I have always been way averse to preservatives in my eyes and have nixed many an eyedrop for this reason.  unfortunately for my eyes, i recently. had bilateral cateract surgery and had to take a preservative laden steroid drop for four weeks per eye.  this wrecked my dry eyes and i still haven't recovered from it two months out! (per my optho, there is absolutely no alternate available at this time.)”

  • “I am shocked that BAK is continually used by companies despite the known toxic effects on the cornea! “

  • “Every time I have tried over the counter eye drops that had preservatives in them my eyes would get infected.  My ophthalmologist did have me try Restasis and I had a severe reaction within 2 days.  I had the same thing happen when he had me try Xiidra, severe burning within 2 days eyes sore and swollen.  The only thing I use is Purilens several times a day, avoid eye makeup, stay in doors on hot windy days, use a humidifier. Use Vigamox  when they get severely irritated due to dryness.  Lots of mucus issues but the saline solution and laying down with a warm cloth over my eyes for a little while helps.  Once in a while I have to have the doctor pull the dried mucus off my eye or eyes when it gets really stuck.  I have found, through research, that increasing the Omega 3's helps a lot, so I take 6,000 mg a day.  I also started taking a Mazui Berry Extract, 120 mg a day which is suppose to be for tear production, but I have had all 4 tear ducts blocked, but my eyes feel somewhat better since I have started taking it.  Supposedly at UCD in Sacramento Ophthalmology, there is a Ophthamologist that specializes in Sjorgrens,  who has developed a serum made from your own blood in treating severe cases of dry eyes and has been very successful with that treatment for at least 10 years.  I'm not there yet.  I've been lucky in researching and trying different things, so far.”

  • “Why, oh why won’t manufacturers stop using BAK. Oh, greed, why else?”

  • “I am allergic to BAK.  I don't know why companies put them in their drops.  So many people have problems with them.  I don't think companies are going to change that.  I wish they didn't do it.  What really helps me is autologous serum eyedrops.  Use at least 4 x a day plus numerous other eyedrops.  Seems like I am always using eyedrops during the day.”’

  • “Preservatives in the presc & otc drops, gels & lubs do more harm to my eyes, making them much worse.”

• Is this even relevant?

  • I am mostly past eye drops using mostly ointment and occasional eye drops

  • “I haven’t found ANY eye drops that are particularly helpful, so my concern is symptom relief for more than 5 or 10 minutes. Preservatives are secondary at this time.”

• PF options

  • “In the dryness of winter, I use Oasis Tears Plus single use vials exclusively, multiple times a day and night. Now that it's spring, I found I can use Oasis TearsPF during the day, Plus vials during the night. So my eye drop routine changes throughout the year, perhaps that is the case with others BUT preservative free is the way to go!”

  • “I always prefer natural, non-chemical additive and preservative-free options.”

  • “If non-preserved eye-drops ar acceptable, why use ones with preservative in them?”

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