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Fantastic news for dry eye patients in Norway

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  • #16
    Originally posted by joanna View Post
    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 H˘pital 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 :-)

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    • #17
      Sunshinelover:

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

      :-)

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      • #18
        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 !

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        • #19
          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 :-)

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          • #20
            Originally posted by Toril View Post
            I've been a patient of Prof. Baudouin at H˘pital 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.



            Originally posted by sunshinelover View Post
            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!
            Last edited by joanna; 19-Sep-2012, 03:47. Reason: quote added

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            • #21
              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 :-)

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              • #22
                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).

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                • #23
                  Not to mention dr Latkany in NY . 400 usd for 30 minutes ....

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                  • #24
                    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.

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                    • #25
                      spmcc: I didn't know that they are doing research on Sj°gren's in Bergen, but I haven't been reading research news is ages, so... Good news anyway!

                      sunshinelover: When buying Restasis at H˘pital 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.

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                      • #26
                        yes thanks toril. I have sent them mail so we will see. iwas wondering after doing these hot compress thing my upper meibomian glands has stoped working to. Can someone pleas answar why?

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                        • #27
                          I don't know, ugly-eyes, but it is most important to be very gentle, and pay very careful attention and become sensitive to what makes your eyes better or worse. What works for one person is not necessarily going to be right for your different sensitivity problem. When we see the doc, s/he thinks about what's happening and suggests from the options what helps healing, from experience, and this is why some docs are better to work with, in mutual respect, to think about what to do.

                          What a relief to know that you are in touch with Toril and other friends in Norway about these new docs
                          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.
                          Last edited by littlemermaid; 27-Sep-2012, 06:26.
                          Paediatric ocular rosacea ~ primum non nocere

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                          • #28
                            Originally posted by ugly-eyes View Post
                            yes thanks toril. I have sent them mail so we will see. iwas wondering after doing these hot compress thing my upper meibomian glands has stoped working to. Can someone pleas answar why?
                            Ugly-eyes... so good to see you're back here on this thread. I hope you get good news from new doctors.

                            I've had meibomian gland dysfunction for 17 years and my glands aren't dead. Try to be optimistic and find a good doctor to help you with a diagnosis and proper treatment.

                            Keep us posted, please.

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                            • #29
                              By the way; I see that Cationorm is now available on the Norwegian market (an oil in water emulsion dedicated to the treatment of dry eye symptoms). I tried these 3 years ago or so when they were just released in France, but unfortunately they didn't give me any relief (as my eyes never seem to respond well to eyedrops containing oil). It might work well for others though, so thought it should be mentioned here.

                              Link to the product on the website of Santen Pharma:http://www.santen.eu/no/products/ter...Cationorm.aspx


                              Toril :-)

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                              • #30
                                Are these OTC or only prescreption?
                                Of course they do not exist in Sweden....

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