Question for Dwelle/Dakrina users

[Rebecca Petris]

how grabby is grabby

I think there are probably a few different sensations... or degrees of it... kicking around under the name "grabby". Calli's is a relatively extreme one. Dakrina occasionally gives me something similar to what she's described but milder, like that feeling of it being awfully laborious to drag my lids over my eyes (lasts up to 10 minutes) and on very rare occasions a feeling like I really want to wash the dang stuff out of my eye (but as she notes, adding saline after the fact makes it worse). I've known other people who have had it. It's one of the reasons I don't find myself using Dakrina as much this year... only happens once in awhile but I don't want to have one of those days; my eyes (right eye in particular) respond more predictably to Dwelle.

...Yet funnily enough, during the last week or so of my conjunctivitis (which thankfully after a few more days without sclerals and with some Pred is finally getting much better) my eyes have absolutely been lapping up Dakrina - it is the only drop I have used for upwards of a week.

Rozjen, fingers crossed for the Freshkote.... i'll be so interested to see how that ultimately turns out for you!!!

One thing about OTC drops - I've mentioned this before, & hope no one takes it wrong or personally: As a palliative, everyone expects them to feel good right now, or at worst leave them feeling indifferent. And Dwelle/Dakrina (and sometimes NutraTear) just aren't like that. I wouldn't want to make Dwelle/Dakrina Rx just to get around that of course but this is honestly a "plus" to Freshkote now being prescription only: it sets expectations in a completely different place. Most of us would tolerate side effects from a prescription drop that we don't expect and won't accept in an OTC, and most of us would give a prescription drug a lot longer to kick in than an OTC drop.

[liz56]

Question for Rojzen & Rebecca: APL-105

The longer I'm on FreshKote, the more intrigued I am by its effects. So far, it has not eliminated some of the worst, most raw-feeling days for my MGD eyes, the way Restasis seems to have done, for me (I'm experimenting with replacing Restasis with FreshKote), but FreshKote may yet do so. And it definitely produces that grabby feeling, which I LOVE (:^), because that is the sensation that makes me feel like I have an intact tear layer actually covering my eye. . .I am hoping that the patented lipid in FreshKote helps my corneal health, over time, even though I don't think it is yet producing subjective benefits that exceed those of Dwelle, which lacks the lipid. Anyway, I'm on week 3 of FreshKote, and trying to hang in, because I have a wonderful feeling about Dr. Holly's theory regarding penetration of each relevant tear layer by a carefully-calculated-density of substance. . .I think that sensation of our eyes being "wetter" reflects the penetration of the respective layers by Dr. Holly's 3 components. . .

Rojzen, how are things progressing with Freshkote? I am curious about how you are doing going on a month into it, how often during the day and night you apply the drops, and if you are using anything else at night. Your experience sounds really encouraging. I'm glad to hear that it has the "grabby feeling," because that is what I love about Dwelle.

Also, Rebecca, I know that FreshKote (APL-105) came on the market just recently as a prescription drop. Do you think that it eventually will be sold OTC?

[Rojzen]

progress on FreshKote

So glad you asked! On the second week of my FreshKote regimen, which is 1 drop in each eye 4 times daily (with one right before bedtime), I experienced some old rawness and burning pain in the eyes, and was discouraged. The grabby effect that some of us enjoy persisted, though, and so I continued treatment.

On the third week, I sustained uninterrupted eye comfort, and a real sense of surface coverage, making me think that the FreshKote benefits might be cumulative over time.

Unfortunately, I've run out of FreshKote before finishing my trial month (my doctor's proposed duration), and I'm going to have to start all over again in a week and a half. (My doctor is out of state, and she's either been very slow, or altogether forgotten to mail me the FreshKote Rx I asked for. (I was using FreshKote samples, all this time.) Once I get the Rx in hand, moreover, it will take several days for my pharmacist to get the product in hand, as it is not ordinarily stocked. . .and so I will have to find a local doc who is willing to prescribe two bottles at a time, for me, to prevent gaps like this, even after I have an Rx. . .Ugh). .

Anyway, I'll be off FreshKote for the next week+, and I'm also remiss in keeping Dwelle on hand, as a logical back-up. And so I will use MiniDrops, a PVA/Povidone blend that is listed in our Yellow Pages. It's a pathetic substitute for the carefully compounded FreshKote and Dwelle, but I'm stuck. . .I can tell that MiniDrops are not penetrating to the mucin layer because they barely sting at all, when I instill them.

And yes, I'm hypothesizing that the stinging of the Dr. Holly drops has something to do with mucin penetration, because even though my TBUT is zero, I don't usually stain much on Lissamine Green or Rose Bengal testing of my conjunctiva, anymore, and so I think my conjunctiva are not so damaged that FreshKote would sting, for that reason. . .I could be wrong, though, and be experiencing stinging with the Dr. Holly products because of essential dryness, as the tears I produce probably don't actually WET my ocular surface. . .

In a nutshell, then, by week 3, I was feeling AS well, if not better, on FreshKote than on Restasis (which I'd used for 3.5 years). . .I also had the sense that my eyes were somehow getting healthier. . .

Most importantly, FreshKote and Dwelle both prevent the erosive effect of opening my eyes in the a.m.. . .They seem really to coat the eye surface like a plastic shield, so that I can open my eyes without any sticking or pulling/tearing of tissue. . .Quite amazing. . .because I don't reapply the Dr. Holly drops in the middle of the night, even though I'm an insomniac, and tend to get up and run around lots, throughout the night...

[liz56]

Rojzen, I'm at once happy to hear that you noticed real benefits from Freshkote and sad to hear that you have run out and have to wait to begin use again.

Your story is heartening, though, and I appreciate the detail in your response to my questions, especially the part of your post at the end about the AM sticking. My ears (and eyes!) are always perked up for ways to get out of that problem! After two months of success, I have experienced sticking and erosions again. However, the poor vision was not as bad as it had been in the initial erosion cycle, and it cleared up faster as well, and, I am happy to say that I have gone nine nights without an erosion and without sticking. So, I am staying true to the drops.

In the interim while you await your new prescription and are living without Dwelle, you may want to check out Hypotears (1% polyvinyl alcohol and 1% polyethylene glycol 400), available in most grocery and drug stores with the rest of the commercial eye drops <http://www.us.novartisophthalmics.com/hcp/products/hypotears-hcp.jsp>. They contain less than half the polyvinyl alcohol that Dwelle has, but it may be more than the drops that you mentioned. (Dr. Holly also writes about it <http://www.dry-eye-institute.org/vitapo.html>).

Thanks, very much for replying, and I hope that you will continue to keep me informed of your progress!

[Rojzen]

will check it out

Thank you so much, liz56, for that feedback. . .I went on for too long, as usual, but the part about my waking up without sticking and palpable erosion is really the case. . .I am so glad that you are approaching a steadier resolution of that issue. . .Once I get enough FreshKote in hand, and feel I can be lavish with it, I'm going to drop it into my eyes the second I wake up. . .openly the eyes only partially, and then getting the drops right in. . .

I do indeed now recall that HypoTears is a PVA compound. . .I think the oldest Refresh product is/was, too. . .Thank you so, so much for that heads- up, because MiniDrops are VERY hard to find. . I find them only in RiteAid, which is quite an expensive store, on the whole. . .HypoTears are way more prevalent. . .

I may be able to report whether my TBUT increases, by late October. . .but I am fairly certain that I'll be checked for TBUT by Christmas, at least. . .That will convey whether the FreshKote is producing serious benefits. . .Restasis does not increase my TBUT at all. . .If anything, it probably decreased it, because the castor oil preparation of Restasis is very irritating and drying for me. . .(I continued to use it because it killed my burning pain.)

If, as I hope, improving one's mucin layer can improve TBUT, then possibly FreshKote is of benefit to both evaporative and aqueous cases, both of which probably involve mucin deficits, in the long run. . .I will have to return to Dr. Holly's writings to refresh on that. . .

[liz56]

Dr. Holly's Research

Rojzen, I hope that you are getting by okay today!

I dug up a bookmark that contains an abstract of a paper by Dr. Holly from 1985 that mentions HypoTears.

http://www.ncbi.nlm.nih.gov/sites/en...&dopt=Abstract

Colloid osmotic pressure of artificial tears. J Ocul Pharmacol. 1985 Winter;1(4):327-36.

Holly FJ, Esquivel ED.

Department of Ophthalmology and Visual Sciences, Texas Tech University Health Sciences Center, Lubbock.

While the total osmolality of the aqueous tears and tear substitutes has received much attention in the past few years, the colloidal osmolality or the oncotic pressure (which includes the Donnan effect), has received practically no attention except for one single foreign publication. The colloidal osmolality of tears is twentyfold less than that of the corneal stroma, which in turn is less than 1% of the total osmolality of an isotonic solution, i.e. the magnitude of the colloidal osmolality is only a few hundreths of a per cent of total osmolality. This may be the reason why its role was thought to be unimportant by many researchers. Despite its relatively small magnitude when compared to total osmotic pressure, the oncotic pressure has been shown to play a major role in the maintenance of the water balance of bodily tissues and has been used as a diagnostic parameter in alveolar edema. The same principle has been used to formulate a collyrium, Dehydrex, or dextran-containing storage media for excised corneas such as the Kaufman-McCarey medium that have a colloidal osmolality at least equal to that of deturgescent corneal stroma. Such formulations are able to dehydrate corneal stroma even in the total absence of epithelium. Dehydrex has been shown to have a beneficial effect on damaged epithelium and is thought to be the drug of choice for the treatment of recurrent epithelial erosion when other treatment modalities have failed. In the present study, the total osmolality and the oncotic pressure of several artificial tear preparations presently marketed was determined and compared with the oncotic pressure of tears and the corneal stroma. We have found that the oncotic pressure of HypoTears is nearly sixty times higher than that of the leading artificial tear, thus it is comparable to the oncotic pressure of Dehydrex. We believe that the favorable patient acceptance of HypoTears is more likely due to this unusually high oncotic pressure than to its hypoosmolality. Such an artificial tear formulation should be effective in ameliorating microcystic epithelial edema and in increasing impaired epithelial adhesion to the underlying tissue in the cornea.

[Rojzen]

such an excellent reference; FreshKote warms even the adnexa

Thanks so, so much, Liz56. . .I found that abstract of Dr. Holly's article on oncotic pressure, with reference to HypoTears's favorable rating in that regard, to be extremely reinforcing!

I'm wondering if the basic Refresh drop, that is now almost extinct (also a PVA/Povidone mixture) approximates HypoTears. . .

In any case, Dr. Holly's drops went on to capitalize on the critically important understanding of the role of oncotic pressure, and so I still count the minutes 'till my FreshKote refill arrives (next week). . .Your kind wishes for my hanging in, in meantime, are so appreciated! I have a long drive ahead of me tomorrow, and I'm a little jittery about setting off without any kind of Dr. Holly drop or Restasis in the old peepers. . .I have lots of Restasis in stock, but I'm toughing it out, not using it, and still wanting the FreshKote or Dwelle to be my ticket. . .

I noticed, this past week, btw, that the FreshKote even warms my external eyelids and margins. . .This is a big issue for me. . .Since 1998, I've suffered from that disabling menthol sensation not only on my eyes, but on the surrounding tissues. . .That's why I always cringe when I read the advice to chill eyedrops before instilling. . .Even when I have burning pain in the eyes, the last thing I can tolerate is cold or minty-ness. . .My life became a quest for eye warmth, the moment I became afflicted. . .but I do realize that many, many of use benefit from cooling. . .

Anyway, off to Ohio tomorrow for a long week of packing. . .Will catch up soon. . .

[lynnie5510]

dakrina/dwelle/freshkote

My experience with Dakrina/dwelle/freshkote. Dakrina - I only need to use it once or twice daily during the weekdays because of the dry air of the office I work in. It does cause pretty intense stinging in my eyes for about a minute but after that my eyes feel good and it lasts much longer than any other over the counter eyedrop I have ever used. When I was using it more often (4-5 times per day), the stinging subsided the more I used it - Dr. Holly once explained to me that was because over time the dakrina actually heals the top layers of the cornea and once that has happened the eyes are less sensitive. Time and patience is definitely the key with this drop.

I use dwelle occasionally during the night or first thing in the morning and I have noticed minimal stinging.

I have ocular rosacea, leading to MGD, so I really liked the freshkote but don't want the hassle or expense of dealing with getting an RX etc. particularly as I am doing good on restasis supplemented when needed by the dakrina and dwelle.

Bottom line, the Dr. Holly drops are the only over the counter drops I will use now - all others (and I have a huge plastic bag full of sample drops that I didn't like!), pale in comparison. Whatever stinging occurs is for me a small price to pay. Plus, the proof is in the pudding - my last eye exam showed no staining and a TBUT almost normal!

Lynnie