Dwelle and Dakrina in Europe?

[Toril]

I'm new to this forum and suffering from very dry eyes. I've tried all options available (in Europe) for making my eyes feel better, but not much luck. I see that there are various drops on the market in the US that we haven't got over here...like the drops Dwelle and Dakrina that have been mentioned many times on these pages. Is it somehow possible to get these drops imported to Europe, or does it exsist drops similar to them available in Europe? Does anyone know? What about drops containing castor oil? I'm also going crazy because Restasis is not on the market here. I know they are not working for everyone, but I really, really want to try them (I tried to make my eye-doctor importing them for me, but he told me it was going to cost a fortune). Well...obviously I don't get that chance...because I live on the wrong side of the globe. I read something here about some people in France getting cyclosporine drops made by a hospital,...do they do that in other countries as well? Never heard about it around here.

Greetings from Toril (a very frustrated Norwegian girl aged 28)

[np1981]

Apparently Dwelle and Dakrina are only available to US residents, at the moment. I'm not aware of anything similar in Europe. So do you have aqueous tear deficiency?

[kakinda]

Hi Toril,

I’m sure there is cyclosporine in your hospitals at least to prevent corneal graft rejection. It’s probably a 2% formulation as in most countries. So the capacity exists (Restasis or cyclo isn’t something new, it’s been used on dogs for 15 years). However, there’s always a slight difference between capacity and will, so maybe, we, Europeans need to be pro-active about this and convince medical authorities. Please have a look at my post on this section of the site (please note that almost every country as a special import procedure for drugs that aren’t available in that specific country… it’s likely to be very complicated. If you feel like joining Keratos effort’s and/or try to set up an association in Norge, you’re welcomed and we’ll try to support you.
Yes, cyclo is used in several European countries and in Austria for instance.
I’m almost certain there isn’t Dwelle and Dakrina in .eu. There’s a French lab working on cyclo so maybe we’ll have a European option before Restasis finally crosses the pound (who said the world is getting smaller anyway?). In France we’re rather lucky before 3 hospitals produce cyclo in different oily formulation and dosages, which is clearly an advantage (because one may tolerate one but not the other… it’s my case).

If you read French, here's our website http://keratos.free.fr

All the best to you,
Kakinda

[Rebecca Petris]

Is it somehow possible to get these drops imported to Europe, or does it exsist drops similar to them available in Europe?

Hi Toril and welcome to Dry Eye Talk. Sorry I didn't see this earlier. I'm afraid Dwelle and Dakrina are not available in Europe. We have regulatory approval for them for the UK, but not for the rest of Europe and probably won't anytime soon. Couple of options... Some patients in Europe purchase them and have friends in the US forward them. (You can purchase them online as long as the shipping address is in the US.) Also, there is a 4th product similar to Dwelle and Dakrina called Freshkote which I'm told may be available soon in Europe..

Can you share more about the other things you've tried? Perhaps there may be a few more things to try listed in our FAQ pages at www.dryeyezone.com/faq. Also I'd encourage you to browse around the bulletin boards for some fresh ideas. I'm always learning new things from other members.

[Toril]

Dwelle and Dakrina

Hi!

Thanks for the reply. I know some people in the US,..I'll contact one of them and see if I can have some drops sent over. I really, really hope they plan to get that new drop from Dr. Holly on the European market soon (is it already on the US market?). Would it be possible for me to import that one from the US (if I have an eyedoctor doing it for me)?

Toril

[Toril]

My eye troubles; reply to question

My eyes produce too little tears (don't remember what the Schirmer's test showed, but it was low for sure) and I don't think the tear film is of a good quality either (don't remember if they measure that in any way?... Long time since I was at the eye-doctor). They don't know what is causing the dry eyes. I have rhematiod artrisis and have undergone eye surgury because of exothalmus (as a side-effect of Grave's desease). For a while they tought I could suffer from Sjögren's, but I didn't match the criterias (exept for the dry eyes). I believe my dry eyes is caused by inflammation of the tear glands (since I've got 2 auto-immune deseases), but there is no way to find out. My eyes produce quite much tears when I cry (the "best" eye produces more tears also when I cry)....is that a common thing? I haven't found information about it anywhere.

Toril

[Toril]

Cyclo in Europe

Hi, Kakinda!

..do you have the names of the French hospitals you were referring to? I would like to mention the work they are doing there to my eye-doctor. Have you tried cyclo made at the hospital? Do you get much help from it? Is it having the same effect as Restasis? If my hospital is not willing to make cyclo drops (actually...I doubt it...),...would it then be possible to get the drops from the hospital in France?...Lot of questions,...I know....

I would like to joining Keratos effort's, but I have no idea about how to set up an association.... is it complicated? Does it take a lot of time and work? I have no idea about that kind of things.

Toril

[np1981]

My eyes produce quite much tears when I cry (the "best" eye produces more tears also when I cry)....is that a common thing? I haven't found information about it anywhere.
Toril

I too produce few tears generally, but produce plenty of reflex tears (when I yawn, cry, sneeze, etc). Have you ever tried punctum plugs to conserve the tears you are producing? Plugs have helped me. I think that if you produce relfex tears that means your tear producing gland is at least capable of producing tears.

[Toril]

Plugs

I forgot to mention..yes...I have my lower ducts plugged,..but I get no help from it at all! I noticed no difference from day 1. I've not been getting any explenation why it's like that. Have anyone heard of reasons why some people don't get any help from plugs? I've also tried drops made of the serum of my own blood (no doctor gave me that option,..but then I heard that someone else had got it, and I "forced" the doctor to let me give it a try). What tear substitutes are you most pleased with?

Toril

[np1981]

I once had plugs in my lower ducts and found no relief at all, but then recently I had plugs in the upper as well (4 plugs in total) and it made a huge difference. Ever since then I have not needed any artificial tears. My eyes are quite moist most of the time - but I still have other issues to deal with (oily layer, blepharitis) so inflammation is still yet to be controlled.

[kakinda]

Hi, Kakinda!

..do you have the names of the French hospitals you were referring to? I would like to mention the work they are doing there to my eye-doctor. 1. Have you tried cyclo made at the hospital? 2. Do you get much help from it? 3. Is it having the same effect as Restasis? If my hospital is not willing to make cyclo drops (actually...I doubt it...),...4. would it then be possible to get the drops from the hospital in France?...Lot of questions,...I know....

5. I would like to joining Keratos effort's, but I have no idea about how to set up an association.... is it complicated? Does it take a lot of time and work? I have no idea about that kind of things.

Toril

I've numbered your questions:
1. yes
2. the drops have helped me with inflammation issues, etc... I'm currently at 0.1% concentration so actually higher than restasis, I've tried 0.05% and 2% but the latter caused some severe irritations but one never knows if the vehicle (oil: maize or ricine oil most of the times) or the cyclo itself that's causing it.
3. no idea since i've never tried restasis but some formulation of cyclo are almost the same
4. I believe your docs should be the one doing the request but it may not be impossible and as in most dry eye-related issues worth trying then... as long as it's safe.
5. you could do anything from being just a contact point in Norway to tells us what's going on there, the costs of drugs, etc from more complicated things like creating your own Keratos section or own association. Depends on the time you have and how much you want to be pro-active... someone will have to do it someday as things don't fix themselves up... as least as far as dry eye is concerned.

As for the names of the Hospitals doing cyclo:
1. Hôpital des Quinze-Vingts (15/20): various concentrations (from 0.05 to 2%), maize oil, the one i use currently...
2. Hôtel Dieu at 0.2% ricin and maize oil (i've found it more difficult to tolerate).
3. Hôpital de Lille (city in Northern France).

I may write a private mail if you want to pursue this idea to give some contact details + the advocacy association business ... in which we, all of us dry eye sufferers, should take part to some extent...

take care,
Kakinda

[sazy123]

Hi toril, its next to imposible to get clyrosporine in hospitals in the UK. But i put alot of the downfalls down to our crapy Health service that is the 'NHS', its not just eye problems that you have problems getting good treatments for. In france they can get cylorsporine in hospitals so you may be able to.

U can always fly to the states to get it. or you can try and get a perscription and get it imported in, but only a eye doctor knowledgeable on dry eye.

[Steve]

I forgot to mention..yes...I have my lower ducts plugged,..but I get no help from it at all! I noticed no difference from day 1. I've not been getting any explenation why it's like that. Have anyone heard of reasons why some people don't get any help from plugs?

Toril

I'm new here, but I was told that plugs wouldn't help me because it was the lipid (oily) layer of my tears that was screwy, not the liquid layer. Maybe that's your problem too (you sounded vague about that part), and your doctor put in plugs without checking too carefully...

[Toril]

Plugs

Him Steve!

Wecome to this forum! I'm quite new here as well. I got plugs because my eyes produce too little tears (low score on the Schirsmer's test).

Toril