The Dry Eye Zone story

[Rebecca Petris]

I started writing a post today to ask regular Dwelle, Dakrina & NutraTear users for help with a little project. In order to put it in context, I thought I really ought to explain a bit of the history of these drops and how I got involved with them.

I started writing and, while trying to cast a brief retrospective glance over the history of the Dry Eye Zone and the drops, I became more and more engrossed and drifted into story-telling mode. I don't often get personal when writing but somehow today it just kind of flowed out. When I found I clearly wasn't going to get anything more productive done today, I figured I might as well go ahead and post the whole history, on the off chance it's interesting to anybody other than me .

[Rebecca Petris]

Part I: The Dry Eye Zone

Some years ago, I had an unsuccessful LASIK and in the course of my struggles to get an accurate diagnosis and treatment of my complications, I developed a vocation for trying to lend a hand to fellow complications patients, mostly in the UK where I was living at the time. As a hobby this ranged from one-on-one assistance to speaking engagements at medical conferences (such as the British Society for Refractive Surgery, for whom I later developed a distance learning course) to lobbying which ultimately led to getting a bill into Parliament to regulate laser eye surgery in the UK (currently on its third reading). Because of my vision problems I ended up leaving my profession (aviation finance) and moving back to the US, where I teamed up with some other patients to form LaserMyEye, Inc., a small nonprofit.

Since I was spending a lot of time with LASIK complications patients (online, on the phone, etc) it was soon obvious that chronic dry eye tops the list of problems, and has perhaps an even greater adverse impact on quality of life than uncorrectible vision defects because of the pain levels and activity restrictions many patients experience. I’m a little handicapped by not having a technical bone in my body but over the years I did invest as much time as I could in understanding dry eye better and in writing user-friendly materials to help patients understand the condition and treatment options.

Eventually, the D’Eyealogues bulletin board was attracting readers who had dry eye from causes other than LASIK, as were the dry eye materials on the LaserMyEye website. It seemed there was a real need for basic information about dry eye causes, symptoms, diagnosis and treatment. I was getting contacted frequently by patients with the same experiences – debilitating symptoms, little to no success with even palliative, let alone therapeutic treatments, and intense frustration with the apparent unconcern and inexpertise with which their complaints were met by some eye doctors.

As a result, I gradually began to think about starting a separate website for dry eye patients. In late 2004 I formed The Dry Eye Company and started building The Dry Eye Zone, which was launched in February 2005. During that time I had also teamed up with Cindy (most of you know her from this bulletin board), my years-long LASIK buddy who has been through severe dry eye struggles and who has been a major support, inspiration and resource for other LASIK dry eye patients for years. Cindy has since moved on to pursue other interests (still visits though) but has very much been the heart of DEZ.

[Rebecca Petris]

Part II: Dr. Holly’s Drops, from Dakryon to Apothecure

Now, switching over to the ‘parallel universe’ of Dr. Holly’s Drops:
I first heard about the products affectionately dubbed “Dr. Holly’s Drops” on the SurgicalEyes bulletin board back in early 2002. Some of you old-timers will remember those famous threads called the Dwelle Diaries, where some of the LASIK patients that were struggling with debilitating dry eye started using Dwelle and documented their experiences from day to day as they slowly pulled out of damaging erosions cycles. Over time more and more of the LASIK patients began using Dwelle and the others of Dr. Holly’s drops (Dakrina, NutraTear, and APL-105).

Although I was very happy for the people like Cindy who were really being helped, I was secretly a little reluctant to just buy something over the internet from someplace or someone I didn’t know, so I didn’t try them myself until I was about 7 months pregnant with my daughter. This was about a year post LASIK, and with the hormonal factor on top of everything else I was in real pain, slathering ointment on my eyes, covering them with cling film, and still waking up several times. Baby kicking? Nooo problem. It was my eyes that kept me up at night. When the drops arrived, I didn’t initially like any of them except Dakrina. It took some time for it to kick in (this is pretty common) but soon I was sleeping much better and my eyes felt a lot better. Eventually I just threw away everything else in the drawer because nothing else gave me other than very brief relief. – Over the years since then I’ve rotated between Dwelle, Dakrina and NutraTear depending on my needs. (APL-105 is the only one that I never personally took a fancy to, but I know that for some patients that’s the one of the four that works the best.)

Now I’m going to flip further back into the past. What are Dr. Holly’s drops – and who is Dr. Holly? Dr. Holly is a retired lacrimologist, a top expert in his field and widely published. (For more on his background and achievements, see The Dry Eye Institute.) He is also a very kind man who throughout his retirement has continued to assist and educate a great many patients struggling with painfully dry eyes. Dr. Holly formulated his eyedrops in the late 80’s and early 90’s. Unable to interest a pharmaceutical despite the demonstrable clinical superiority of his products, Dr. Holly formed his own company to distribute them. The efficacy of the drops was remarkable. Feedback from doctors and patients was overwhelming. But without the marketing muscle or expertise of a larger company this effort never got beyond a small but loyal customer base of patients with severe dry eye, and Dakryon Pharmaceuticals eventually had to close its doors.

The emergence of the LASIK dry eye phenomenon, where LASIK patients started aggressively seeking better solutions online, was actually instrumental in making these very special eyedrops once again available to at least some patients. With the help of the new legal owner of the drops, Aqueous Pharma, an arrangement was eventually put in place where a compounding pharmacy was able to make the eyedrops and provide them to patients on a prescription basis. Starting with the SurgicalEyes bulletin board word quickly spread and many patients were able to get the drops from the compounding pharmacy.

That’s where things stood when I became a regular user of the drops. They had to be procured from a compounding pharmacy in Texas at considerable inconvenience and expense. I could only get them by having a friend send them to me in England. Later on I got to know the legal owner of the drops at Aqueous Pharma. He worked very patiently to find a way to get all of the drops back into commercial production via outlicensing arrangements, for a long time without success. Many patients, including me, had tried to help by writing testimonials based on our experiences, but the grass-roots approach doesn’t seem to count for much in the pharma world.

[Rebecca Petris]

Part III: Dr. Holly’s Drops, from Aqueous Pharma to The Dry Eye Company

One day towards the end of summer 2004, I had a memorable conversation with the owner that has somewhat altered the course of my life. I was in Seattle on the patio of my parents’ house, in the rain, chatting with him, catching up on the latest in his efforts to out-license the drops. I was feeling very discouraged about it. The whole compounding pharmacy arrangement seemed to me rather tenuous, and I was really concerned that if a licensee did not turn up pretty quickly, the marketing effort would come to a halt, the compounding pharmacy would lose interest, and before long all the users currently dependent on those drops would be left high and dry.

On a whim, I asked him what it would take for someone to launch a small-scale operation, getting the drops mass-manufactured at a proper GMP sterile manufacturing facility and distributing them over the internet. We talked through all the pieces – contract manufacturer, minimum quantities, insurance and so on – and bottom line, although it was clearly going to take hard cash in six figures, it actually seemed quite possible to take on at least one, and possibly more, of the products, at least to somebody culpably impetuous like me . The only limitation was we could not license APL-105 (Freshkote), the fourth product and a sort of variation on Dwelle.

Once the idea of rescuing these drops took hold, the clicks and whirs came fast & furious. Of course it would be an enormous risk, financially, but the benefits were compelling. Current users would be assured of long-term availability. Mass-producing the drops, we could sell them for far cheaper. More patients, and doctors, could be made aware of them as a potential treatment, increasing their options. More people would benefit from Dr. Holly’s scientific advances. And if & when the venture could ever be coaxed and weaned into actual profitability someday, the revenue could be plowed back into patient benefit programs of some kind. Far more than enough material to whet the imagination in a big way.

We’ll skip over the next nine months of frantic work, delays, fears, headaches, stress and more while I tried to get my arms around the daunting logistics involved in launching three products of this kind without experience, staff or funds. It was a hard time, not least because of notable personal events happening in parallel. I finally had to say good-bye to my old finance career (which I’d retained part time) because of my vision and because of family needs, so we settled full-time in Florida after kind of straddling the Atlantic for more than a year. My husband, who is somewhat disabled, went through a health crisis. My father passed away after a short struggle with lung cancer. But there were bright spots too... many undeserved blessings that have been showered down on us, like my daughter Chaidie. (Some of you old-timers may remember the story of our hilarious blind-leading-the-ignorant 2+ hour taxi trip to a hospital in north London back in 2002 when she was born...). She has been the brightest spot in my life ever since she entered it. She’s simply the most cheerful little girl that ever bounced off the walls 18 hours a day .

So the day finally came in June of 2005 when Dwelle, Dakrina and NutraTear became once again commercially available as over-the-counter eyedrops, albeit sold exclusively on the internet for the time being. Which gave birth to yet another beginning, the beginning of the effort to make it actually work, i.e. to create a sustainable business and ensure that the drops remain available permanently, by sheer dint of willpower (in the absence of any useful expertise or contacts). But that’s another story

[Rebecca Petris]

Part IV: The point being....

I sure hope this hasn’t sounded like horn-tooting because this isn't about personal pride. It’s just that I have so thoroughly savoured the consumer-triumph aspect, and being involved in something that makes an important statement:

WE NEED MORE AND BETTER SOLUTIONS FOR DRY EYE, and if the industry won't embrace all the opportunities of achieving them, WE CAN AND WILL TAKE STEPS OURSELVES that will make a difference for at least some other patients.

We should not be perpetually at the mercy of megapharma decisions driven by their shareholders demands alone. Treatments that can improve the lives of substantial numbers of patients with dry eye disease need to be supported and researched and made available in a timely manner, regardless of whether they are able to generate hundreds of millions in annual sales.

We CAN each make a difference! Whether it’s for one person or a million, or somewhere in between, it's making a difference that matters.

[Flick]

What a great story. I certainly hope you feel some pride about what you've done - how could you not be proud of working so hard to help others in need?

I ordered Dwelle and Dakrina a while back, and gave them a brief try but had some stinging. I will now give them another, longer try. They seem to have helped so many.

Thanks,

Flick

[EllenJ]

Flick,
I had the same response and quick using them (Dakrina & Dwelle). That was months ago .... months of suffering ago, I should say. Then, out of desperation, I tried again, only longer this time (and by longer, I mean 5 days or so). To my joy, the stinging went away --- since I was using them consistently. Now, they don't sting at all when I use them, and I don't have to use them nearly as often. I have no clue why that is, but it's almost as if these drops "healed me." I know that's not completely true, because I'm still dependent on them, but they have helped me tremendously, that's all I can say. The amazing thing to me about these drops is how they keep my eyes wet for soooo long. Maybe it's just my eyes, I don't know. Maybe my case of dry eye isn't as severe as some others, I don't know. But my eyes can retain the level of moisture for much longer now after using these drops than they used to be able to. When I would use other drops before, it was like they would lubricate my eyes momentarily, but then literally, moments later, the stuff would evaporate and I'd be left feeling drier than before. This was the case with virtually every OTC product you can buy (I've tried them all). It was a vicious, frustrating, painful cycle that I could not break. No longer is that the case, though, for me anyway. Praise the Lord, is all I can say. And I wish for you the same good fortune.

The only thing I don't like about these products is that they sort of crust my eyelashes together, and in the mornings my eyelids are pretty much crusted together entirely. But, I find that this is a small price to pay for having pretty decent feeling eyes the majority of the day, and I'll gladly pay it!! Plus, using Dwelle at night (which is not thick or oozing) versus those icky ointments that put you out of commission as soon as you put it in since you can no longer see anything is just downright dreamy. The first time I used it I was like "yeah, right -- this isn't nearly thick enough to keep my eyes moist all night. I'm going to wake up at 2 a.m. in horrible dry eye pain." But I didn't, and I never have. It's wonderful. (Except for the crusty eyelashes...)

And to Rebecca, thanks for sharing your story, and for your hard work and dedication to our collective cause. We'd all be in a world of hurt without you!! Your efforts are much appreciated and are to be applauded.

Ellen J.

[Laura]

That is a wonderful story thank you for sharing this.
I have to tell you that although my Husband has'nt found his comfort zone with his eyes yet this forum has been a blessing.I thought being diagnosed with leukemia was cruel enough but for him to have to deal with this agony of his eyes is beyond anything I could have ever imagined.This forum has made me feel that we are not alone in this struggle and am very greatful that you have put this together for those of us who are so in the dark(no pun intended)with all dry eye concerns.

Laura

[kakinda]

Hi Rebecca,

I can certainly relate to the sentence bellow:

"We CAN each make a difference! Whether it’s for one person or a million, or somewhere in between, it's making a difference that matters."

This is the purpose of Keratos as well... and just like you, we've decided that we would not wait for the megapharmas to solve our problem, be at mercy of the very few options available, wait for society to feel sorry for us when it's too late... This is in part why we must do advocacy on our behalf, make the consequences of lasik (not my case) other iatrogenic causes or benzalkonium known for instance and maybe convince smaller pharmas that they may play an important role in improving the condition of DE-survivors.

I am deeply convinced that "A change is gonna come"

All the best
Kakinda

[Bennys]

What a Great Story

I am sending this again as I don't think it went through the first time. (computer problems.) I think it is wonderful what you are doing. I don't get on the computer that often as I am a medical transcriptionist and spend my entire day on the computer. I, too, will probably have to give up my job as my eyes can't take the prolonged computer use. What makes it hard for me is that I am divorced and don't know what other type of work I can get involved in. Long story - but I have two questions. First, did you ever have plugs in all your tear ducts? I do and I am still having problems. My eyes water all the time and they still hurt. I feel like it's just a bandage to the real problem. I am extremely uncomfortable most of the time. Second question, I also tried Dwelle, Dakrina and NutraTears and also had burning. How long should I stick with these products? I am becoming extremely discouraged as I can't seem to get myself even partly comfortable. I stay home a lot as going out in certain types of air really bothers me. This condition has really changed my life and I try to keep the faith that something will help me. Once again, I truly applaud you for what you are doing and am really hoping I will find some answers and possibly even make some friends through this site that truly understand the pain that this condition causes. (I am also a LASIK patient and never had ANY trouble with dry eye before my surgery).

[lynnie5510]

thank you Rebecca!!! and Dr. Holly too!

Just wanted to officially thank you Rebecca for all that you do. You are a true blessing to those of us with DES. During my initial trials with severe dry eye, I came across The Dry Eye Institute site and contacted Dr. Holly. He is such a kind man and he helped me get to where I am today. He personally was sending me drops until your website came about. I was so glad when I got your introductory email - apparently Dr. Holly had given you a list of email addresses of people he had been corresponding with over the years? Dakrina and Freshkote were invaluable to me during my toughest times, and I still use Dakrina during the day when needed and I use Dwelle during the night if needed. I would use Freshkote in a heartbeat if it was easier to get hold of. My eye comfort would not be what it is now if it weren't for these drops, so a reliable source is important! I have given your brochure out to my dry eye doc (who was associated with Dr. Holly and his drops and guided me in my use of them, but didn't know about your site), as well as my regular opthamologist who never was able to find a suitable eye drop for me. I would wish that every eye doctor have access to them and recommend them to their DES patients.

so, thank you again Rebecca for sharing your story and for being such a caring and giving person :-)

Lynnie

[Rebecca Petris]

(((((Lynnie))))) thanks

Bennys... I apologize for not seeing and responding to your questions earlier. I am really sorry abou tthe troubles you're facing with work as a result of the dry eyes.

First, did you ever have plugs in all your tear ducts?

No, I haven't. I've been lower plugged several times without benefit and currently do not use plugs, although I may try them again someday. Some people do well with occlusion, some people seem to be worse off (especiallly with all 4 plugged). One option that some have been reporting good results from is lower plugs plus flow controllers in the uppers - might be worth a try. However for some people upper occlusion just doesn't work, or can't fit, or whatever.

I am extremely uncomfortable most of the time.

Whenever I hear this from anyone, my first thought is EYEWEAR, esp. Panoptx if possible. It's the closest thing to a slam dunk that I know of - not for resolving everything of course but for getting people more comfortable.

Second question, I also tried Dwelle, Dakrina and NutraTears and also had burning. How long should I stick with these products?

Well, there's burning and there's burning. If you experience any prolonged burning, I wouldn't push it. If it's relatively brief, that's fairly common (due to high polymer concentration, in the Dwelle & Dakrina at any rate). I get this myself sometimes especially early in the morning, or during a flareup like I've got right now where my eyes are a nice shade of fuschia. One tip that others have shared that I think is a really good idea is to do a saline rinse about 15 minutes before applying the drops. Seems to kind of calm down the surface and keep the epithelium, if it's roughed up, from getting that initial irritation from the polymers. That's what I do now in the morning - a bit of Unisol, then later on some Dwelle or NutraTear.

As regards how long to stick with it, I think personally 1-3 weeks is a good trial period. For some people the drops are a slam dunk, for others it takes considerably longer to see the benefits.

Hang in there - please let us know how you're doing and if there's anything we can do to help.

[Guest]

That is a wonderful story thank you for sharing this.
I have to tell you that although my Husband has'nt found his comfort zone with his eyes yet this forum has been a blessing.I thought being diagnosed with leukemia was cruel enough but for him to have to deal with this agony of his eyes is beyond anything I could have ever imagined.This forum has made me feel that we are not alone in this struggle and am very greatful that you have put this together for those of us who are so in the dark(no pun intended)with all dry eye concerns.

Laura

may i ask, whats his condition now?

[Rebecca Petris]

You're replying to a post from 2006. Very unlikely the member is still here reading this.

[vinodh]

Thank you. This was very helpful.