Ointments at night?

[Rebecca Petris]

In my opinion, Christina's position is very reasonable. It's simply not always practical to be afraid of everything, and one cannot do endless due diligence on everything. One comes to have a comfort level with some things based on information reasonably available - for example, we know BAK is bad today, just like those of us using contact lens solutions a couple of decades ago gradually came to know thimerasol was bad. So many of us may choose to avoid those and exercise reasonable caution with others. As a practical matter, many of us notice pretty soon if a preservative in a drop we use frequently is bothering us, and as I said we can't spend our lives worrying about the long-term effects of everything

Incidentally, the studies on polexitonium (polyquaternium-42) showed it to be no more toxic/irritating than saline even with frequent use at concentrations far higher than that used in Dr. Holly's drops. If I had the money to do a rigorous long-term study I'd do it, but I don't. My comfort level with this preservative stems partly from the study but also from the simple fact that I know so many people with severe ocular surface disease who have used it daily for ten years or more and tolerate it just as well now as when they started. That may not be scientific, but it works for me.

[kakinda]

Hi Rebecca,
I don't agree with you but I'll answer you more thouroughly later on. We are talking about ointments here and therefore long residence times (thus, the comparison of alledged mild preservatives in drops does not totally apply in my opinion... since it can only be worse not similar). Why do you mention polexitonium? is this the preservative in the ointment Christina uses?
Nevertheless, I am not a dogmatic person and I'd like to read the study you mention on that preservative. I'd very much welcome alternatives to harsh preservative and a truly eye-respectful preservative is one of them.

Could you send me a copy of the study you mention or post it somewhere?
I must admit i've never read anything on that one in particular... and i have read a lot on most of them.

I'm not afraid of everything but I am afraid of preservatives... not in an irrational or dogmatic manner, my fear is supported on my own experience (ulcers from preservative use), some of others (Neil and several person i know in person - cytotoxic effects and severe allergic responses), the research (including knowing the world's most renowned expert on this matter). I've been studying this for some time now... So a fear based on some solid bases.
And yes and one cannot do endless due diligence on everything, this is why I feel I must share my experience on this, It's sort of my duty as a severe DE (worse than that actually) veteran, what I've learn (in spite of my own desires so to speak, I'd rahter concentrate on other things believe me) and this is why I'm working on a website on preservatives along with Neil.
I see it as my duty to talk about this, however you don't have to follow my advice...not to use preservatives in ointments... but please make your decision based on a well-informed basis.
So further thoughts on this later

[kakinda]

Hi Rebecca,
I haven't found any studies on polexitonium (polyquaternium-42).
could you please send me the study you mentioned?
Thanks

[kakinda]

Hi,
I think it’s necessary to clarify a few points in this discussion:

The topic: I believe we should remind everyone that we were talking about gels and ointments therefore very long residence times and preservatives. The issue of preservatives transcends ointments and gels naturally… but it acquires a specific importance with very long residence times (this is not my own opinion but that of most experts). Many people concentrate on the immediate hypersensivity/allergy to preservatives but my worries go beyond that disruption of the tear film (all quaternary ammoniums at least do that so for gels consider something like cetremide, long term hypersensivity /cytoxicity and accumulation in ocular tissue (including the cornea). These two consequences are not easily noticeable by the patients themselves before it’s usually too late (maybe Neil can remind you all of this). I believe we should refrain (in this ointment or gel thread) to mention other situations and preservatives that are not used in ointments and gels for the sake of clarity. Otherwise, we are comparing things that cannot be compared (different preservatives and different uses, durations, etc). I’ll be glad to discuss preservatives in other threads.

My position on preservatives, my motivation: I am opposed to preservatives (except in one situation: contact lens solutions but I support cleaning thoroughly the lenses before wearing them for sure) and so is the association I represent (Keratos). I have no commercial interest in defending any non-preserved drops. In fact I am not personally concerned by preservatives since I no longer use them (besides an antibiotic if needed and if there’s no way to avoid preservatives) the only benefit I may have is additional treatments in PF options for me and my fellow DE sufferers. I don’t think all preservatives are the same (some worse than others but all exert some kind of toxicity since they’re meant to kill germs and do kill cells in the process). I think that whenever there is an unpreserved solution available that is preferable.

The basis for my position: my position is based on studies and my discussions with some of the world’s experts on this, the consequences for many people I know (I mention Neil frequently because you know him and he has stated that publicly) and my own (a different situation but due to the same cytotoxic effects, the difference is that the consequences for me come rather quicly which gave me a chance to identify and stop the process).

As far as my own experience is concerned: I never used BAK drops constantly, I used it several times over 20 years for basically one month per year when combined. For me the consequences have been an increase of erosions. The antihistaminic or anti-inflammatory drops usually help for a few days (6 or 7) but I usually develop an ulcer just after that. I stopped using those drops, I feel worse during the allergic and inflammatory periods but I don’t have the ulcers at the end. At first I thought that the ulcers were caused by the allergy or the inflammation but now I can say that most ulcers were caused by the treatment. Basically, I have had some superficial (but serious) cytotoxic consequences that have caused some scar and some loss of sight. Some people have more permanent damage, the cornea and some less superficial tissues are diseased. Some people assimilate preservatives in their ocular tissues.

As far as the studies are concerned I will post them in a website I’m working on and I hope I’ll be authorized to post the link here. This is clearly the most important aspect and certainly the one that motivates my involvement in this.
My advice actually is: in a case similar to Christina’s (preserved ointments use in a chronic OSD for very long periods and possibly several years) is to consider the risks of long term-use of preservatives. I think it could be better to discuss this with your ophthalmologist first but why not try an unpreserved ointment or gel?

I’m not trying to scare anyone for the sake of scaring people (not trying to put my fears into them let alone some irrational or unsupported fears). I’m not asking (or saying/suggesting to) anyone to stop their treatment because there’s BAK or some other preservative in it. I did not say you should stop your treatment altogether but simply to consider using a non-preserved version of that very same treatment or discuss an alternative with your doc.

I saw that there are alternatives in the US doing a quick search:

Lubricating Ointments (all preservative-free)
• HypoTears (Novartis Ophthalmics)
• Moisture Eyes (Bausch & Lomb)
• Refresh PM (Allergan) (simply preservative-free Lacrilube)
• Tears Naturale (Alcon)

OK I’ll let you digest this first part of the message I wanted to convey.
More soon,
Take care

[Lucy]

Kakinda, fortunately most of the people passing through DryEyeZone will be just that, passing through. There are few of us on here who have been from the beginning. Actually, I have been on dry eye boards for 7 years (as long as Rebecca and I have known each other.

They pass through so fast, in fact, that I can't remember who was here last year with the exception of the few still posting. I don't think that preservatives (or not) will have a lasting effect on 95% of the members of this board. We all have our favorites. Some people have never heard of Muro ointment. Well, let me tell you it has saved me from the brink of erosion insanity more than once. My lasik doc says I "can use it forever." Yeah, just what I want.....to squirt oil in my eyes 24/7! However, if I'm burning and can't open my eyes, I'll squirt "oil" in my eyes.

There are a few who have been harmed by long term use of preservatives, one whom we know from this board. I was harmed by LASIK. Harmed badly. The worst thing that has ever happened in my life (and I'm no youngster). I've been living with the consequences for 7 years. Had to quit working because I could no longer see well enough. Also pain from trigeminal neuralgia along for the 7 year ride. Now, more recently, I have Sjogrens thrown in for the heck of it. Adding more to my dry-eyed pleasures.

Am I worried about a preservative? Nope. Do I switch products? Yes. Do I use more than one product? Yes. Nothing seems to work well, so I just do a sort of roulette thing. Nutra-Tear is my favorite, plus the higher viscosity Dwelle, and TheraTears. I also like Resresh Plus. When I use my scleral lens (which isn't often and I'm frankly disappointed) I use ThereTears. I have Genteal gel sitting on my dresser. I'm more worried about how to get through the night without dosing my eyes every hour. Now, with Sjogrens, it is also needing a drink to ease the parched throat and lubing my lips. It's not just the eyes anymore.

I guess if one needs to worry about preservatives, they can. They have been warned. I worry about people getting lasik. But, that's their choice and their thing. They have been warned. Fortunately, we have a variety of products of which to choose. I see Mistakef and others who have trouble getting most of the choices we have and I feel bad for them. As bad as my situation is, I feel fortunate to have the arsenal to fight this damn thing called "dry eyes." Few people on this board will be here next year as their problems will have resolved and only a memory to them. Count on me though, to be here and I assume you, too.
Lucy

PS. This not a rebuttal to any of Kakinda's post in any way. He obviously knows his stuff and has the facts. I don't do well with facts when it comes to eyes, mainly because I can't read all the fine print (thanks to lasik). Also, the facts do not help us when we need help, now. I never particulatly cared that only 1-3% of people had problems following refractive surgery. I never cared which blade had the best track record. It just didn't matter.

[kakinda]

I think we're talking about people who use ointments therefore I think it's reasonable to assume that their DE diseases has reached the level that requires serious "preservative" attention.

People have been warned, yes... but they dont have the facts and many people talk about them minimising their impact, including some doctors, based on impressions and convictions. I welcome contradiction but based on studies. Some of us have realised the consequences after ignoring them for years...before the studies arrived to confirm this. I just want to avoid that to some people. I was talking the other day to a man who's loosing his last eye due to the use of benzalkonium, so how can I remain silent about this?...
apparently a case of pseudo-pemphigoid. An unknown consequence of preservatives.

But more simple than that, many people don't realise that they may improve if they go PF free. Most studies indicate that...there's a general trend! so I consider it's worth trying and worth mentioning that over and over again. The Timolol PF and non PF comparison study is the paradigm but there are others.

Again people will do what they'll do but at least I feel I've done what I had to do... and will continue to do so. Plus labs need to acknowledge this problem.

You don't worry about preservatives and yet you have erosions? OK then, but the important issue is not whether your worry or not, it's whether you know the facts that will enable you to decide what's best for your eyes. I'm pragmatic, it's the outcome that matters.

Lucy, You have been warned about LASIK and you have warned others about the risks of lasik. I guess this is precisely what I'm doing... except that I'm been harmed by a lot of things actually (including the trigeminal neuralgia and its consequences you and I share). So i don't get the message you are trying to convey... surely you do not think that people have enough alternatives when they cannot tolerate preservatives? surely you wouldn't think that it would be appropriate for me to tell you to stop advocating precaution regarding LASIK because some people won't have that problem or because tehy won't listen or even because it's just a transitory disease?


Anyway more later,
Kakinda

[Rebecca Petris]

This board is meant as a support group and source of information - in that order. The last thing we need here is preservative wars. People want to be supported and informed, not judged for their choices.

[kakinda]

Well, I can certainly agree with that... support and information. But Rebecca I really don't think there's a war between Lucy and myself (well i hope not! I don't consider myself at war... should I Lucy? ), i just truly didn't get what she suggesting that I do. Maybe she was telling me to save myself the bother of informing people... but it's no bother... and it's important so I'd rather do it.
It's not something I do against people but for them willingly.

In some cases support is made thru information... and perharps it can be more effective than just kind words... sometimes (not always I admit). "Too bad... now your eyes are ruined (because of LASIK, because of BAK, because of whatever)" doens't seems very supportive to me so I prefer to inform before it's too late... Plus, I prefer to give this type of info than entering in more emotional stuff but hey... that's me (I have German origins after all!). Being informative is my way of caring please know that and it's probably what i do best. Some people here are great to reboost others morale... I may not have that talent.

I believe that giving some information is also a way to support people to make well-informed decisions that may induce an improvement. My purpose is not to judge the decision after that...anyway i hereby agree not to judge people who decide to continue to use preservativesit that's what worries you. This is why I said "Again people will do what they'll do but at least I feel I've done what I had to do... and will continue to do so." and " but the important issue is not whether your worry or not, it's whether you know the facts that will enable you to decide what's best for your eyes."
It's also whether I've done my duty or not as someone who had that problem and has studied it.

Basically once people are truly aware it's not my business anymore (I may worry and care for them but agree to do so silently). If that's what Lucy was trying to convey then she's probably right and wiser... than I am because she was one step ahead of me. I was not yet at "the judging part" at all, since I think the crucial problem lies in the informative (or lack thereof) part.

Take good care
more later,
K

Lucy: sorry to hear that the sclerals didn't help that much.

[Rebecca Petris]

i just truly didn't get what she suggesting that I do.

She wasn't. That's my point.

As I understand it, she was simply stating her position and her choice. So was Christinalatina. Perhaps I am being hypersensitive on their behalf, but I think there is a fine line between informing people of your research findings (which can be done many ways, such as posting study results in the medical forum, which I always appreciate because they are easier to find afterwards) and opinions, and implying they are making bad choices and setting bad examples for others if their opinions and choices are different than yours. It is that kind of implication that I am reacting to.

[Rebecca Petris]

p.s. If I sound unduly terse, I apologize. I do sincerely appreciate the concern you have for members and your wanting to make sure they are aware of all their options and the potential risks and benefits that comem along with them. The reason I have been reacting as I have is that I do not want members to feel like they're liable to be scolded if they sometimes choose to use preserved products, particularly when an equally effective unpreserved one is not available. I am sure that is not what you intend, but that is how some posts occasionally come across to me personally.

[Lucy]

Kakinda, I wouldn't know a preservative war if it hit me in the face. Absolutely not. I don't read your long posts on scientific stuff because I can't concentrate and read that long. Frankly, I personally find them boring...not yours in particular, but any scientific posts, especially long ones. Others might like to read them, I'm sure. Not sure where you went there about "a war." I am too old to be at war, don't have the energy and especially against another person with dry eyes!

I just said that some may find the preservative thing of little importance. Especially since most of the members come through here like the wind. A couple of months of hot packs, TheraTears, a little whining and they're off. Now, wait a minute, this is going somewhere it isn't intended and you keep writing......more to come. Not from me.

My (recent) erosions are coming from the Boston Scleral Lens if you want specifics. When I wear the lens, I use TheraTears which is as pure as the driven snow. Other times I load up on NutraTear. When I have an erosion, I use what my 7 years experience tells me will work best at that given time. I do not post on DEZ rarely to warn others of lasik. My frequent posts are to help people who are having a tough time and give a little encouragement. If someone mentions they have bad eyes as a result of lasik, I may mention that, but that's not the purpose of most of my posts.

Anyhooooooooo, I'm outta here on this subject. Too deep for me. I love being the shallow person I am. I don't any particular points to make. Love, Lucy

PS. The reason I can type such long posts (albeit my bad eyes) is that I'm a secretary, can type fast and don't need to look at the screen as you can probably tell by some of my errors. Most everything is sans proofreading. It's just too much effort.

[neil0502]

Ok,

I'm taking a stand.

The evidence seems overwhelming: there are preservatives that are MORE damaging, and preservatives that are LESS damaging to eyes--PARTICULARLY dry eyes, and PARTICULARLY with frequent use.

But I've seen NO STUDY indicating that ANY preservative DOES NOT damage the surface of the eye.

Interesting quotes:

http://www.revophth.com/2001/june/cme0601_article.htm

Preservative surface toxicity may be difficult to recognize. The differential diagnosis includes chronic inflammation from dry eye, episcleritis, conjunctivitis or blepharitis. In other words, preservative-induced toxicity does not have distinct signs or symptomatology. Also, damage due to ophthalmic preservatives often goes undiagnosed because it is difficult to differentiate toxicity of a medication from the damage caused by a preservative.

So ... how will you know?

Frequent use of ophthalmic solutions containing preservatives can cause a higher incidence of epithelial damage, edema and bullous keratopathy in patients with glaucoma, dry eyes, infections or iritis, who need to use eye drops for a long period of time.8 Repeated doses of preserved eye drops can have a cumulative effect, and the prolonged contact with the epithelium may cause chronic irritation and subconjunctival fibrosis. This may increase the risk of failure of trabeculectomy in patients with glaucoma.

Even with infrequent dosing, preserved solutions may be contraindicated in the presence of trophic ulcers or other states of severely compromised corneal epithelial integrity. Patients with compromised epithelia or corneal ulcers may be the most vulnerable to ophthalmic preservatives because these conditions increase penetration and exposure to preservatives.8 LASIK patients with postoperative dry eye may overuse preserved over-the-counter eye drops, which may cause preservative-induced adverse effects. Patients with dry eye may be more susceptible to preservative toxicity; such patients may not produce sufficient tears to dilute a harmful preservative. Any patient who uses multiple preserved drugs increases the concentration of preservatives on the ocular surface. High concentrations of preservatives or repeated preservative exposure increase the chances of adverse effects.

I recommend reading the article.

I have no intention of "creating fear" in the minds of any potential reader. On the other hand, there IS GREAT CAUSE FOR CONCERN. If you KNOW that preservatives, overwhelmingly, cause difficult-to-diagnose harm to your eyes, you should make a VERY THOUGHTFUL and WELL-INFORMED decision before embarking on them as a long-term treatment strategy.

I talked on the phone with another DES suffer. He told me, "I'm not a wealthy man, but I would give one million dollars in cash to any doctor who could turn the clock back two years on my DES. I thought I was in trouble then, but I didn't realize how much worse it could get."

Why would I do anything with a realistic chance of making me worse ... if I had options?

I wouldn't.

Would I advocate LASIK, PRK, or other refractive surgery to a DES patient, knowing the realistic chance of the surgery making them worse?

I wouldn't.

You Mileage May Vary.

Presenting facts doesn't cause half the anxiety that a worsening, and spiraling-out-of-control DES condition causes. I'll take my chances that my "Use preservative-free wherever possible" advice will induce anxiety in a few people ... because I know it will help more than a few.

Neil

[neil0502]

Another one ... from:

http://www.guideline.gov/summary/sum...=3549&nbr=2775

POTENTIAL HARMS

Tear supplements may cause adverse effects, including reduction of the desired effect, allergic response, and toxic reaction.

Ophthalmic preservatives used in artificial tear solutions and their potential adverse effects are:

* Thimerosal--hypersensitive reaction in an estimated 10-25 percent of users
* Benzalkonium chloride--Preocular tear film instability, lowered breakup time (BUT), and disrupted corneal epithelial cell functions when dosed at commercial concentrations more frequently than three times daily
* Chlorobutanol--evaporation, corneal epithelial cell changes
* Ethylenediaminetetraacetic acid (EDTA)--contact allergy
* Chlorhexidine digluconate--storage in the corneal and conjunctival epithelium
* Ointments placed in the eye may cause blurred vision

[Rebecca Petris]

The RevOphth article is a good one. I enjoyed it. Thanks for the link. I had read it before but quite some time ago.

This seems to be a classic example of how different people can draw different conclusions from the same information.

My personal layperson's tips for readers about preservatives - which, as with any of my personal opinions, is subject to change as I learn more - is more or less summed up at this page:

Preservatives.

I am not very technically inclined and I do not have any particular scientific knowledge of many dry eye issues, including preservatives. Instead I generally tend to content myself with browsing the medical literature when time permits and, between that and observing trends in the community, developing a practical working practical knowledge of the things I feel I have most reason to care about. In the case of over-the-counter lubricants specifically, there are few if any generalizations I have ever bought into, except this one: that we should never, ever, ever use an artificial tear with BAK.

Beyond that, I just want to say this…

I am feeling kind of a looming tug-of-war about preservatives. I do not envision DEZ as the place for that kind of conflict to play out.

Neil, I deeply appreciate all the effort you put into helping people around here. I am frequently in awe of the breadth of information in your posts and the sensitivity often displayed towards people’s feelings. Likewise Kakinda, you’ve reached out to member after member to share information and help people. I may have a difference of opinion with you both about the nature and relative priority of concerns relating to (non BAK) preserved artificial tears, but I respect and appreciate your motives and your sense of urgency about warning others. At the same time, I kind of think there's such a thing as overdoing it. Even when one is motivated solely by genuine concern for others, that is not a guarantee of how one comes across to others.

I talk to people with dry eye every day, including many who frequently visit but do not post on the board. I am often nearly overwhelmed with a sense of the suffering that is happening and with the isolation that many of these people experience before finding a community who understand.

So the character of this board as a welcoming haven for dry eye patients is very, very important to me and I feel very protective of it. Many people lurk for a long time before posting. I know from personal experience and from speaking with users (and lurkers) what makes people reluctant to post and why it’s often quite intimidating for new users to take the step of posting. When people enter our community, my first concern is that they FEEL supported, and that they FIND information that can help them get in better IMMEDIATE control of their dry eye symptoms. Once they are able to cope better day-to-day, then they have more leisure and energy for investigating bigger picture issues and weighing the pros and cons of choices about tears, preservatives, drugs, plugs, and what have you. Those who want to find detailed information on any topic generally manage to do so.

===

One final (I promise, sigh) note. I've been told privately that if I publicly offer opinions about preservatives I ought to preface it with a conflict of interest disclosure. That came in the context of a post I made in mild support of Genteal Gel as a reasonable option for a someone to try. I was told in essence that my moderate position about preservatives can be construed as motivated by a need to defend Dr. Holly's drops (which contain a preservative) in which I have a financial interest.

My answer to that, briefly, is:

a) Technically, I have a conflict of interest related to every product in The Dry Eye Shop. I own The Dry Eye Company, The Dry Eye Shop, The Dry Eye Zone etc.

b) As a practical matter, I have never experienced any personal gain from any product in The Dry Eye Shop. I don't even draw a salary, let alone profits. If/when my company starts minting money, you'll know it, because I'll be posting work-from-home job openings for disabled dry eye patients on this bulletin board. (Yes, I'm serious.) Meantime, I think I'm pretty much disclaimed up the wazoo, as I've littered the site and board with my history and my relationship to the company and board and site and to Dr. Holly's drops.

c) My opinions are my opinions. Nothing more, nothing less. This site is full of my opinions. Take them for what they're worth (often very little), and do your own homework.

[kakinda]

HI Rebecca,
I think that indeed you may have been hypersensitive to this issue (on behalf Christina or someone else). The thing is: my post are not attacks on any individual here but just stating some info on a subject on which (Neil and myself) may hypersensitive as well BECAUSE IT HAS DAMAGED OUR CORNEAS and BECAUSE THERE IS COMPELLING EVIDENCE THAT THERE ARE SERIOUS RISKS OF LONG TERM USE and bECAUSE WE DONT WANT THIS TO HAPPEN TO OTHERS...
So please don't shoot the messenger but shoot the message (if you will) with any studies to support your opinion.
This thing is getting personal whereas in my opinion it shouldn't... I'm talking about studies or I'd like to. I don't criticise people for using drops that contain preservative (especially be since there are no alternatives; that's precisely my point; I have been advocating for alternatives all along... for all of us who can't stand perservatives and those who would benefit from them so if any criticism should arise from me it's likely that I will address laboratories' policy on this rather than individuals). I just hope that they do so knowingly and that they look for any options available. Trying to provide that information is (I think) acceptable if not needed.

On a side note: You seem to be defending Lucy and Christina against attacks that never existed. That was my point. But it doesn't matter I haven't taken it personally...

She wasn't. That's my point.

As I understand it, she was simply stating her position and her choice. So was Christinalatina. Perhaps I am being hypersensitive on their behalf, but I think there is a fine line between informing people of your research findings (which can be done many ways, such as posting study results in the medical forum, which I always appreciate because they are easier to find afterwards) and opinions, and implying they are making bad choices and setting bad examples for others if their opinions and choices are different than yours. It is that kind of implication that I am reacting to.