Testimonials on the consequences of ocular preservatives

(don't forget to send us the pseudonym and/or the country you would like us to use for your testimonial).

I came to My Doctor in 1998 WITH a hypothesis for what was causing me years of chronic, severe eye pain: (ciliary or) accommodative spasm -- a charley horse of the focusing muscles of my eyes. Based on his exam, and review of my lengthy chart, he said we'd "treat it empirically," prescribing nightly use of "cycloplegic" (dilating) eye drops. Some months later, one day I woke up with significantly improved vision AND a dramatic reduction in pain. My diagnosis was correct.

In addition, he performed my third strabismus surgery to align turned eyes. This was contributing to the problem. I was then told to stay on the drops, every other night, as "maintenance."

Once "fixed," I went immediately looking for work, since I had been without work for five years. I took various temp jobs, the last of which resulted in a permanent position with an e-commerce company.

But the workload was intense ... and pure paperwork and computers--the most difficult thing for my weak eyes ... and within months ... the spasm was returning. My doctor said I should switch to nightly use of the cycloplegics. This was enough for a while, but ... somewhere in that first year back to work, I begin to suffer severe stinging, burning, and dryness in my eyes.

I complained of this to my doctor who referred me to the clinic's oculoplastic surgeon, who said, in effect, "Yes, you have very dry eyes." He recommended plugging my lower "puncta" (tear drains). This offered minor help, but the dry eye problem became steadily worse. He then recommended upper puncta plugs. Somewhere in the early stages of the dry eye complaints, my doctor prescribed a course of Restasis (ophthalmic cyclosporine) and something called Lacriserts. He may have prescribed other treatments for the dry eye pain, but I don't recall. None of these treatments had any positive effects. He never said, "I wonder if it's the drops."

Meanwhile, the demands of my 80+ hour a week, computer based job were killing my eyes. My doctor prescribed stronger cycloplegic agents to keep the spasm at bay. Simultaneously, I continued to suffer ever-worsening dry eye burning, stinging, and pain. The oculoplastic surgeon recommended punctal cautery: surgical "welding closed" of the tear drains. We did first the lowers, then the uppers. This brought a tiny measure of incremental relief, but ... very soon, the problems got worse.

Other docs were looking at me for a potential LASIK (or similar) surgery, but ... based on my worsening dry eye symptoms, I never proceeded. Refractive surgery is KNOWN to induce, or aggravate dry eye ... and I was entirely risk-averse ... especially since I had NO CLUE what was making the dry eye so severe.

Again ... somewhere in there ... we're probably in 2004 by now -- nearly four years after starting work and nearly six years after starting the cycloplegic drops ... the dry eye problem continued to get worse.

My doctor prescribed Atropine--the strongest cycloplegic drug available. This helped the cramping issues, but seemed to make the 'surface' pain worse. Based on MY cursory review of literature, it seemed that Atropine had a "bi-phasic half life," so I e-mailed my doctor that I would like to begin using it twice a day. He "signed off" on that.

Fast forward a bit to August of '04. The glare and fatigue from being permanently dilated and trying to read is brutalizing me, and the dry eye pain is nearly crippling. I'm soliciting the leading experts in the world for opinions on my case. Based on recommendations from my doctor, I seek out Melvin Rubin, retired ophthalmologist and guru among eye docs.

In August 2004, Dr. Rubin told me--in addition to other things--to STOP using cycloplegics immediately ... that they are NOT meant for long term use ... and that the "preservatives in them can damage the corneas." I stopped using them immediately, having NO desire to compromise the health of my eye (but assuming I was lucky and hadn't ALREADY DONE any damage. I didn't make the connection between Dr. Rubin's comments and my current situation).

So ... with the underlying accommodative issues no longer manageable, I try to manage, but unsuccessfully, my job. I am declared permanently disabled ... through age 65.

I try to switch to Plan B: live a life outside--biking, hiking, skiing, travel, running, windsurfing, etc.,--NO reading and NO computers--but ... very quickly, I realize that EVERYTHING I do hurts. Being in moving air, heated areas, air conditioning, ventilated buildings, the grocery store, a car with a/c on, sun, wind, sand, hiking, biking, rollerblading, dust .... EVERYTHING hurts ... and my vision is far more variable then ever before. We were in CONTRACT to buy a home in Fort Collins, Colorado, but--at the last minute--I decided that I could NOT live there because of the low humidity and apparent inability to manage the ocular surface issues.

While looking to my doctor for answers and seeking medical advice on what's happening (trip to Denver for evaluation for Autoimmune diseases, internal medicine, endocrinology, infectious disease, etc., etc.), I happen to remember Dr. Rubin's comments about the preservatives damaging the cornea. I look in the medical literature and it is FULL of documentation that--indeed--cycloplegics themselves, AND, more particularly, the Benzalkonium Chloride used to preserve many eyedrops ARE KNOWN TO cause dry eye and severe corneal damage. This has been well documented for several decades and became immediately apparent in two minutes searching on PubMed.

My doctor balked at the theory, but referred me to the clinics corneal specialist (whom I'd seen before). The corneal specialist admitted to having no expertise on the effects of BAK, but suggested I go to a leading researcher for biopsy and further pathologic/histopathologic studies. He thought of a guy in Texas, whose name =I= knew: Steve Pflugfelder, but ...

I determined who the foremost authority on the subject was: Pr. Christophe Baudouin, in Hopital Quinze-Vingts, in Paris, France. Reaching out to him, he said that--based on my history and description of symptoms, it sounded like a clear-cut case of BAK-induced toxicity. I asked if I could be seen in his clinic and arranged to do so. Baudouin examined me twice--once in July and once in September--performing tear analysis and confocal microscopy, primarily. Based on everything he saw, he concluded that:

1) I suffer from "corneal hyperesthesia" due to an abnormally large number of hyperactive corneal nerve endings;

2) That the apparatus that PRODUCE the three tear components (meibum, aqueous tears, and mucin) are all damaged;

3) That my eyes show the pathological markers of infection that is non-responsive to trials of antibiotics;

4) That my eyes show the pathological markers of acute inflammation that is non-responsive to trials of preservative-free non-steroidal anti-inflammatory drops;

5) That my eyes are clinically "severely dry;"

6) That it is his opinion that ALL of this was the result of long-term use of cycloplegic drugs, primarily the preservative, Benzalkonium Chloride, and that this damage is WELL documented in the literature;

He has no further treatment recommendations at this time, and deemed the damage "irreparable." He suggests that I avoid heating, air conditioning, dirt, dust, dry places, high places, etc. In short, he has no idea where and how I will make a life .... ESPECIALLY considering the severity of the addition of the underlying problems for which the drops were ORIGINALLY prescribed.

At this point, my doctor is recommending additional specialists (Ocular Immunologist, Harvard) and that I give strong consideration to the following surgeries:
-clear lens extraction/intraocular lens implantation
-conjunctival transplant
-corneal transplant
-stem cell transplant
-additional strabismus surgery, perhaps every few years, to maintain alignment

All of these surgeries carry inherent risks, INCLUDING the likelihood of exacerbating already critically dry eyes. None of them will fix the dry eye problems OR the "corneal hyperesthesia" that Baudouin thinks might be the most damning insult of all. Some of them--though hugely compelling to me, at this point--are pretty well contraindicated BECAUSE OF long-term exposure to BAK.

Dr. Baudouin is of the opinion that the risks of ANY further surgery outweigh the potential benefits.
And now I'm screwed.

My underlying accommodative and binocular function problems were declared disabling to begin with. And now this. I don't HAVE a Plan C. I can't stay inside, and I can't stay outside. I've got nowhere to be where I'll be okay. I suffer chronic pain, dizziness, fatigue, cramping and nausea from the underlying issues--GREATLY exacerbated with any nearwork. Nearwork, for any length of time, causes my eyes to "lock up" in a "pseudomyopic" state, AND alters my eye alignment, causing double vision.

But the environmental issues may actually be WORSE: I'm highly light sensitive, intolerant of wind, dust, air conditioning, and heating. Low humidity (eg, airplanes, mountains) is brutally painful and medically risky. On top of all of this, ocular surface diseases like mine INDUCE variable and blurred vision--the LAST thing that MY eyes need. It simply makes the underlying issues worse. At this point, for example, I'm having great difficulty with night driving and may have to stop entirely.

The ONLY additional known treatment that has been unreservedly recommended to me at this point it the Boston Foundation for Sight Scleral Lens Device (about $11,000 in total). I WILL be traveling to Boston in January to pursue this option.

Since all of this has happened, I have been a patient at a Pain Clinic, and am receiving ongoing treatment for depression. I cannot figure out any way to make a LIFE at this point ... much less a living.

CONSUMERS: please avoid BAK-preserved drops where there is an alternative.

HEALTH CARE PROFESSIONALS: please don't prescribe drops preserved with BAK when there is an acceptablealternative. If there is NOT an acceptable alternative, please contact the pharmaceutical companies to urge them to create one AND monitor your patients closely for signs of ocular surface damage or dry eye syndrome.

PHARMACEUTICAL COMPANIES: please explore options for preservative-free ophthalmic medications.

Thank you,

Neil
California
USA

I've already written my testimonial regarding my main disease "neurotrophic keratitis" but I also have severe allergic and symptoms similar to atopic keratitis. In my case allergy and tobacco are the two main adverse factors contributing to my disability. Since i got better care in Paris and Rouen, including cyclosporine and scleral lenses, my situation is better... or should i say less worse. One big issue remains that affects all my treatments and prognostic: severe ocular allergy that last as long as 5 or 6 months every year (I'm mainly allergic to several tree pollens: plane, ash, flaxinus, etc and graminea: grasses, etc).

During that period every year, it's a permanent fight to try to maintain the sclerals to keep my ocular surface healthy. however, allergy and allergic swelling seriously complicates my task. Another aspect that seriously complicates my situation is that I need to avoid preservatives in eye drops. If it weren't for preservatives in eye drops I would probably have a much better life and some control over allergies. the fact is that the new ocular antihistaminic as absurd as it may seem all contain benzalkonium. I have had some severe reactions to thimerosal but more than that it's preservative cytotoxicity -particularly detergent ones like BAK - that I've learned to fear. it's absurd because preservatives increase inflammation which in turn is an important vector of inflammation. Moreover, preservatives are toxic in long-term use so how can one treat seasonal allergies which such drops? Cytotoxicity of preservatives leads to epithelial cell death thus increase the main problem in my disease (lack of cell regeneration). Drops are meant for unhealthy eyes but seem to be made for more than healthy ones...

Anyway, I used to use BAK containing drops every year to help me control over allergies and some control over my life (in particular professional life) however, after a few days of being better, I usually had superficial keratitis, sometimes even ulcers each time I used BAK-containing drops -the last one I used was Opatanol) for more than 5 or 6 days. Some drops did help during the first 3 or 4 days but beyond it usually lead to corneal erosions. These corneal erosions sometimes lasted as much as 15 days during which i could not work. So in the end it only made matters worse... and it's just not worth it. I've stopped using them but I do not have a solution to control my severe allergy that in combination my main disease do not enable me to open my eyes during some periods of the year. At least by stopping the BAK containing drops (and using the older and less effective drops that are usually commercialised in single use vials... more expensive but worth it) I've managed to reduce at least 75% of my corneal erosions even though I do not have a solution to lead a normal life. If I had continued to use BAK-containing drops, and considering the damage cause by BAK, the amount of corneal scarring would very soon lead to complete loss of sight in one of my eyes. Only systemic cortisone seems to help but that long term consequence of that is glaucoma or cataract... So I rinse my eyes frantically to wash away the allergens as much as possible. I do spend a fortune in preservative-free saline serum single use vials and some antihistaminics.

I'm always amazed by the little attention severe ocular allergy gets and particularly atopic and vernal keratitis... It's truly a disability to work with corneal erosions and yet no-one seems to care. It must have some impact on productivity right? Same thing for preservatives, I still get prescriptions containing BAK and sometimes docs are surprised when i tell them that a particular drop contains BAK. "Is that true? If so you're right you should not use it". Ok, then but what should I do besides what I'm doing: preservative free vials and constant rinsing?

Even though docs are increasingly aware of preservative use risks, they have very few alternatives. And that's my current dilemma that may cost me... my eyes.

To finish in a lighter tone, I must that there has been a serious improvement in terms of ophthalmologists' awareness of this preservative paradox. More and more, I don't even have to mention it, docs will automatically suggest that I use preservative free drops only... by themselves. Before, I used to intervene on this before they agreed. At least the problem is now identified... we have identified the solution to fix this: make all ocular drops available in preservative free versions. So let's do it.. what are you pharmas waiting for? to be sued?

As a newly-diagnosed dry-eye sufferer with Blepharitis, I was advised only to "try all the over-the-counter drops I could" until one seemed to help. This was in Sweden where the quality of care for chronic conditions is quite poor, and finding a specialist who can see you within a year is sometimes difficult. So I couldn't just find a better specialist.

One of the few drops that felt soothing when first applied was Visine Night, a European OTC product which includes Benzalkonium Chloride in known cytotoxic concentrations. I didn't know this, all I knew was that my eyes often felt worse in the morning than at night when I put them in, and that the dry-eye was slowly worsening. Worse, I was trying other drops in the daytime, and even the most promising ones were painful to use.

When I finally found out about the dangers of BAC, I trashed the Visine Night and looked around for a preservative-free alternative. As an unexpected side benefit, I found that some good day drops that had been too painful to use, were now quite soothing!

Over the next two months I saw a noticeable improvement in my dry-eye and Blepharitis symptoms, and can now use several eyedrops that were previously too painful. I hope I am healing from the damage caused by the preservatives!

UPDATE: I have improved my regime slightly by removing the last preservative drops I was using. I have switched from Systane to Systane Preservative-free unidose. These are available only by mail-order, but it's worth the trouble, no?

I was starting to wonder if I was becoming sensitive to the Polyquad preservative in Systane. So far my eyes do seem to feel a little better. It's hard to say in just one day.

Steve,
Stockholm, Sweden & London, UK

Testimonial about using a drop with preservatives:

I have autoimmune-related dry eyes, and for treating inflammation in my eyes my eye doctor put me on Vexol. Vexol is a cortisone drop, preserved with the preservative Benzalkonium Chloride. Unlike many other cortisone drops, it’s not likely to risen the ocular pressure with extended use, and is therefore considered as safe for long term treatment. The plan was to use it for 3 months before starting treatment with Restasis (ophthalmic cyclosporine), as cortisone works faster than cyclosporine.
The first couple of weeks my eyes felt better than... in a long time, and looked whiter and less inflamed as well. The drop burned a bit upon installation, but it went away within some minutes. Then, after using the drop for about 1 month or so, I noticed that the conjunctivochalasis I’ve got in both eyes got worse, and the whitening effect the drop seemed to have in the beginning was getting less "effective". This continued for a while, and after Vexol for 2 months my eyes all of a sudden got much worse than they were before I started using the drops. They got terribly sensitive to sunlight, it felt like the few tears I had were evaporating the same second as they were spread on the eye, the eyes felt terribly sore, and well…as a result I was hardly able to keep my eyes open. I was panicking of course, wondering what on earth was going on. I had read about allergy to Benzalkonium Chloride and I recognized some of the symptoms. So, after discussing it with my eye doctor, I decided to stop using Vexol to see if it could be the drops causing all the new gained problems. Within 2 weeks my eyes gradually turned “better” again (well…back to state they were before I started the drop that is).
Conclusion: I obviously developed a sensitivity towards Benzalkonium Chloride, which explains why my eyes felt good in the beginning when I used the drop (as I benefited from the anti-inflammatory effect of cortisone) but later got worse than ever (as I, after some time, developed a reaction to the preservative). If there had been cortisone drops without preservatives on the market, this problem had been avoided, and my eyes would have gotten better with treatment instead of worse!

Toril (Norway)

I had LASIK in 2006 and I have experienced such intense, chronic eye pain in my post-LASIK life that I can count on one hand the number of times where I went for over 30 minutes without being aware of the pain in my eyes. Based on what I have learned, I would NOT recommend LASIK to anybody!

An eye doctor who has worked with many post-LASIK complication patients said it best when he stated; “My feeling is that LASIK surgery and other refractive surgical procedures exist solely to enrich doctors and the corporations that manufacture the laser equipment and not to benefit mankind.”

I understand that there are people who are “happy” with their LASIK outcome. However, these same people would have been happy with glasses and/or contact lenses had they never heard of LASIK. For those of us who have had bad outcomes (and believe me when I say that we are not as small of a % as the LASIK industry would want you to believe), we are left to live with various complications including, but not limited to poor vision, eye pain, and dry eyes.

I should note that I have 20/20 vision from LASIK, but I wish that I could turn back the clock when I wore glasses and did not experience chronic eye pain and severe dry eyes. LASIK MD’s often have very few options to fix LASIK complications. Therefore, if you become one of the LASIK complication statistics, you will find yourself in a place you wish you never knew existed.

The cornea is the most highly innervated tissue on the surface of the human body. When the cornea is damaged, the corneal nerves can emit an incredible amount of intense physical pain. Having said this, there are very few people in this world who truly understand eye pain and can sympathize with it. Most people who have not had ocular surface damage from LASIK or through the use of preserved drops or through natural problems like autoimmune diseases have no idea how much pain the eye can produce.

I will also point out that it is amazing what a story like the Wall Street Journal (WSJ) article titled “A Closer Look At Dry Eye” can do for public awareness of the issue. I have a relative who finally "got it" that dry eye can be debilitating simply because a post-LASIK dry eye patient was quoted in the WSJ article as stating that “Dry eye just sounds so trivial, but it’s a disability”. Just the fact that this statement was printed in the WSJ made it valid in my relatives’ eyes. The fact that he has heard it from my wife during conversation just didn't seem to make it sink in like a media article.

I have learned the hard way that when it comes to your eyes, you must have a good dose of healthy skepticism when it comes to what is recommended to you by the eye community including eye doctors. There is a very good reason why most eye doctors where glasses and do not get LASIK. I am equally confident that if an eye doctor needs eye drops, he will reach for drops that are preservative free.

Unfortunately, the eye community does not feel a sense of obligation to insist that a harmful procedure like LASIK be terminated or that pharmaceutical companies should produce preservative free drops whenever possible and charge a few extra cents for the added cost. Remember, the health and well-being of your eyes are at stake and the last time I checked, we only get two eyes in this lifetime.

Yet I feel it would be helpful to have some guidance, as my daughter is getting very depressed, and is unable 
to consider school in this condition.

BLS (US)

I recently developed symptoms of an allergic reaction to my eye drops.  
I've been searching for possible reasons and discovered your website.  
Bravo!!!  Thank you.  It looks like I've been taking 3 different 
eyedrops (6 administrations a day) with benzalkonium chloride.  I've 
been on these meds for years and can't imagine continuing with these 
symptoms so must find alternatives. 
 
Please include me on any mailing list so I can benefit from your 
insights.  Do you have any charts showing amount of various 
preservatives in different drugs?  Interestingly, my situation is caused 
partly by insurance problems -- U.S. insurance companies don't want to 
pay for combination products.  You have given me another reason why 
combination products are so necessary for anyone with difficult to 
manage glaucoma. 
 
Keep up your good work.  BLS

CN (Australia)

I went to my optometrist for my 2 yearly eye check up. I have no known problems with my eyes or my sight, but just go every 2 years as you are advised to do.

Towards the end of the check up, Alcaine eye drops (yellow ones) were put in my eyes (as they have been done to me many times before) to check the pressure at the back of the eyes, standard procedure. Within seconds my eyes had swollen to the size of tennis balls and were bright yellow and red and watering profusely. Following on my face started to swell and I started to feel quite unwell. Three days later my face is still slightly swollen and my eyes still sore, and still having to use the anti-histamine drops as well as moisturizing drops as the computer and air conditioning in my office is affecting my eyes, making them feel sore and dry.

The ingredients of Alcaine are: BENZALKONIUM CHLORIDE & PROXYMETACAINE HYDROCHLORIDE, and since reading your testimonials I cannot believe they are using this product in optometrists to healthy eyes!! I am hoping against hope that I have no long term damage done to my eyes.

Kind Regards,

Jim (US)

In reviewing your list of eye drops that contain benzalkonium chloride, you list Combigan.  The latter,  as you very likely know,  is 
a a combination of timolol at .5%  and brimodidine at .2%.   and  benzalkonium chloride at  .oo5 %  (repeat, .005%)   Combigan's  
advantage is that it can be utilized twice a day instead of three times a day for other anti glaucoma products and  secondly,  its lower 
concentration of benzalkonium chloride. 
 
Combigan in the U.S. is a  patented product that  costs me $135.00 for a 60 day supply and is not covered by my prescription insurance.   
However, my pharmacist suggested to me that the two components at the same concentration are available as _generic_ products

 which are free to me under my insurance. 
 
At my request, my doctor thereupon prescribed the two generics:

 brimonidine .2%  which  has also benzalkonium chloride at .05% and and 
timolol .5% which  has also benzalkonium chloride at .01%. 
 
In addition, another  glaucoma  medication, Lumigan, also contains benzalkonium chloride at .05%
 
You may wish to add these products to your listing of products that contain benzalkonium.

AR (UK)

To Whom It May Concern

I was told by an eye hospital in 2008 that I may be sensitive to some preservatives in contact lense solutions and eye drops well I had a severe case of eye strain recently and was given some brand of Allergen eye drops with the following ingredients are these quite toxic to the eyes because I had some odd symptons like redness of whites felt a bit nauseous eyes felt uncomfortable like a mild burning. I was very shocked and switched to the preservative free type which was a lot dearer but wasn't happy with that.

The ingredients in the eye drops are:-

polyvinol alcohol 1.4%

preserved with Benzalkonium Chloride

Disodium Edetate

Sodium Chloride

Sodium Phosphate Dibasic

Sodium Phosphate Monobasic

Hydrochloric acid

Sodium Hydroxide

Any advice given would be appreciated made me little angry because they are supposed to be like kind to eyes or help eyes but how can they with all that stuff in them.

Kind ~Regards

CS (UK)

(July 2009 - UK patient)

Many thanks for your site!

This is just to let you know that COSOPT glaucoma drops, and LACRILUBE eye ointment are now available in preservative-free versions in the UK.

Here is link to Cosopt P-F patient leaflet:-
http://emc.medicines.org.uk/medicine/19143

Also, regarding Xalatan glaucoma drops, my Ophthalmic surgeon says a preservative free version is not available.

With many thanks.