Fantastic news for dry eye patients in Norway

[Toril]

spmcc: I didn't know that they are doing research on Sjøgren's in Bergen, but I haven't been reading research news is ages, so... Good news anyway!

sunshinelover: When buying Restasis at Hôpital Quinze-Vingts in Paris, you pay 35,70 Euro for 32 vials (one box) and then a "retrocession" of 21, 55 Euro (this amount will be the same no matter how many boxes you decide to buy). I usually use one vial twice (keeping in it in a small glass in the fridge) to keep the costs down.

[spmcc]

I noticed that there is a lot of published Sjogren's research coming from Broegelmann Research Laboratory, The Gade Institute, University of Bergen, Bergen, Norway.

Perhaps there's a way for the researchers/MDs to refer people with DE/MGD to someone they recommend.

[sunshinelover]

Not to mention dr Latkany in NY . 400 usd for 30 minutes ....

[Toril]

PS: Yes, I would say that the prices are more reasonable than what I've been paying in France (but ok, I've been seeing the Professor himself, at his private clinic, so I guess that's why it gets so expensive; I pay 150 Euro for a 20 min. consultation. The first time I was there I had to pay 160 Euros).

[Toril]

Joanna: I'm sure they speak very well English. Most Norwegians do, and one of these doctors has even done research at Harvard Medical School.

Toril :-)

[joanna]

I've been a patient of Prof. Baudouin at Hôpital Quinze-Vingts since 2007, and I've been prescribed Restasis ever since then as I've got very dry eyes due to autoimmune issues (Rheumatoid Arthrisis and Grave's disease).

I see, that's why they prescribed it to you.

I have an appointment with a doctor in prof Baudouin's team in November, but I have post-laser dry eye, not autoimmune, so not much chance for restasis in France
I booked the appointment using a form on their website so they gave me appointment with someone else, not prof. himself.

Thank you so much for all the information Toril, next time I'll try to contact profesors secretary directly.

I now have an appointment in Olso in october, booking flight tomorrow , as well as in Paris in December . So thankful to you Toril !
I spend all my money on eyes now - feels good to do something !

sunshinelover,
please let us know how the Oslo clinc went for you! Do they speak English?
Looks like there is not much waiting for the appointment and the visit is affordable (if I anderstood 1000kr is 120euros for 40 minuts of tests?)
I'd spend all my money too, if only this could help!

[Toril]

Glad to hear that I could help you! I got in touch with Prof. Baudouin back in 2006 with help from a previous member here (he lives in Paris and he actually came with me to the hospital the first times as well), and I don't know how my life would have been now if he didn't help me out that time. I was desperate to talk to a real dry eye specialist and to try Doxycycline and Restasis, so to go to Paris was the only option for me back then.

My Parisian friend helped me, and now I'm trying to help others that are in the same situation as I was back then. My pleasure :-)

[sunshinelover]

I now have an appointment in Olso in october, booking flight tomorrow , as well as in Paris in December . So thankful to you Toril !
I spend all my money on eyes now - feels good to do something !

[Toril]

Sunshinelover:

I don't remember the exact price of Restasis now, but I'll write you when I've looked it up!

:-)

[Toril]

Toril, this is amazing, I live in France and I was told you can only get restasis if you have hard case of Sjogrens and they import it for the patient after some long and complicated commision.
And you come to France to buy it? How does it work? Do you get it from a regular farmacy or do you buy it in the hospital?

I've been a patient of Prof. Baudouin at Hôpital Quinze-Vingts since 2007, and I've been prescribed Restasis ever since then as I've got very dry eyes due to autoimmune issues (Rheumatoid Arthrisis and Grave's disease). I get a prescription from him during the appointment, and then later I pay them and pick them up at the hospital pharmacy. As I only go to Paris 1-2 times a year I need to buy a lot of drops when I'm there, so now I have an arrangement with a pharmacist which been working great (I write her an e-mail about 2-4 weeks before I arrive to order 12 boxes of Restasis, she gets in touch with the secretary of Prof. Baudouin which later fax a prescription after consulting with him).

So, my suggestion for you would be to get in touch with the secretary of Prof. Baudouin, explain your situation and ask for an appointment ( I can send you a pm with her e-mail later). I'm not sure if all eyedoctors in France prescribe Restasis, but if Prof. Baudouin (or one of the doctors in his team -I guess it depends on his waiting list if you get to see him or not) think you need treatment with cyclosporine, he'll prescribe it for you.

Toril :-)

[joanna]

I have plugs, and Restasis is working for me (not fanstastic, but it's reducing the inflammation to a certain degree). Prof. Baudouin had no concerns with prescribing Restasis for me, and he knows what he's doing. I'm planning to book an appointment at Tørreøyneklinikken in a few months. As I've already got a dignosis and I bought Restasis for a whole year the last time I visited Paris, I don't need to rush it.

Toril, this is amazing, I live in France and I was told you can only get restasis if you have hard case of Sjogrens and they import it for the patient after some long and complicated commision.
And you come to France to buy it? How does it work? Do you get it from a regular farmacy or do you buy it in the hospital?

[sunshinelover]

[QUOTE=Toril;75961]Sunshinelover:

I have plugs, and Restasis is working for me (not fanstastic, but it's reducing the inflammation to a certain degree). Prof. Baudouin had no concerns with prescribing Restasis for me, and he knows what he's doing. I'm planning to book an appointment at Tørreøyneklinikken in a few months. As I've already got a dignosis and I bought Restasis for a whole year the last time I visited Paris, I don't need to rush it. Would be interesting getting my eye tested with the super fancy and new equipment they've got there though, and also it seems there might be a way I can get most of the expenses for Restasis covered if I get one of those doctors send an application for me to HELFO. Earlier I've been told I had to pay everything myself (and also it has been impossible to find a doctor here that would actually give me a prescription).

Toril,
How much does Restasis cost in France ?
I,m investigating the possibilities here in Sweden and it looks like the authorities may need 180 days to decide , wow , thats half a
year !, Might be better to buy in France to begin with , if ....

[spmcc]

Sorry to interrupt - but I'm hoping that ugly-eyes is reading this thread. Ugly-eyes, are you here? Please post so that we know you've seen this thread.

[Toril]

PS: Tørreøyneklinikken is to be found both on Facebook and Twitter, and it's interesting to follow them there (I follow them on Facebook) and to get news now and then on my newsfeed!

[Toril]

Sunshinelover:

I have plugs, and Restasis is working for me (not fanstastic, but it's reducing the inflammation to a certain degree). Prof. Baudouin had no concerns with prescribing Restasis for me, and he knows what he's doing. I'm planning to book an appointment at Tørreøyneklinikken in a few months. As I've already got a dignosis and I bought Restasis for a whole year the last time I visited Paris, I don't need to rush it. Would be interesting getting my eye tested with the super fancy and new equipment they've got there though, and also it seems there might be a way I can get most of the expenses for Restasis covered if I get one of those doctors send an application for me to HELFO. Earlier I've been told I had to pay everything myself (and also it has been impossible to find a doctor here that would actually give me a prescription).

Patrick:

I will send you a message in your inbox on Facebook! :-)