Preserve our Eyes, not our Drops!

K (France)

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 do love winter and snow... guess why?

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? what is the FDA in the US or the AFSAPSS (France) waiting for?