Restasis

Anyone tried it? Did it help?

My eye doc RX it today to prevent possible dry eye damage and give me some relief. My dry eye has been worse lately.

Some of my other docs said not to use it due to possible irritation. So this doc said to use a steroid drop first.

I went and filled it all but I realize now I can't use the steroid drop because it's going to raise my blood sugar. I can't believe I forgot that. My brain just isn't functioning well at all lately.

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  • 000ggg,

    There are some posts on Restasis in healthunlocked.com/search/r...

  • I have tried Restasis (in fact, I think many if not all of the Restasis mentions in the HU threads are from me). In the beginning, I did think it was helping but ultimately, I didn't find much relief with it. I saw no difference when I stopped it so that's saying a lot. So it was back to the OTC drops, gels, eyelid washes and heated bag treatment.

    Until recently.

    In the US, a new prescription eye treatment has become available. I can only hope it QUICKLY becomes available around the world. It is called Xiidra and it has been life changing for me. One drop in each eye, twice a day (preferably 12 hours apart). I've been on it now for about 6-7 weeks and my eyes have greatly improved. I've been able to cut back on OTC drop/gel usage and have been able to wear my contact lenses more often and for longer periods of time.

    It pains me to write about a treatment that may not be available to everyone but I think the more people who ask their eye doctor about it, the faster it will become available to everyone? I hope?

  • Thanks milkwoman, I have started it and I am using the steroid drop first. Sometimes I feel some relief with tears produced which feels so great but also still a lot of dryness and stinging and I still need tons of drops. My eye doc is worried the dry eye and diabetes are going to damage my eyes over time. I will ask about xiidra also and read about it. I think he mentioned it but he said it isn't covered by most insurances. I will call and see if mine covers it or not. I use a number of things for mine, freshkote, humidifier, tranquil eyes, other drops, one from UK, motorcycle goggles etc. When I was first diagnosed it was by dr. Latkany and he said it was ocular rosacea- my eyes were so inflamed then. I was on steroid drops for 2 years, that was the only thing that helped and still used all the other stuff. My diabetes was coming out then and my whole body was having an inflammatory reaction. Then when I was in DKA and put in isulin it improved a bit, now it is worse again. Probably party because my blood sugar is too high lately. I did lower my a1c by 6 points from 3 months ago so I'm working on it but it's very, very hard. My pth is higher and vit d lower but calcium although up is still normal.

  • Go to the Xiidra website and sign up for their iinsider discount card. I got my first month free (FREE!!) and there is a discount for the remaining 11 months.

    Xiidra is VERY expensive (30 day supply is over $500 BUT is around $220 with the iinsider card). I plan on working with my doctor and insurance plan to see if it can be covered. Until then, I've been able to "stretch" my usage by making a single vial last for 3-4 treatments instead of one. This is not recommended by the drug manufacturer (Shire) but has worked beautifully for me with no issues for the last 7 weeks. This way, I can make a 30-day supply last 3-4 months, making it financially feasible until my insurance covers it.

    Shire also offers financial assistance which I also plan on applying for.

    I can't say enough how life changing these drops have been for me.

  • Sounds great but I don't think I can spend that kind of money on it- I have huge expenses with type 1 diabetes, pump/cgm, insulin, test strips, doc visits etc. and I have several other conditions most r cheap to treat so far but who knows what is going to happen here now with health care. We will most likely be going back to Canada at some point. For restasis it is free for the first year. I don't know how they get away with charging so much for this stuff, it's criminal. If I were rich I would try it and see if my eyes can feel like they used to, that would be amazing. Mine all started with what seemed to be conjunctivitis and they never went back to normal after that. Then my whole body started to fall apart. I still have hope that type 1 will be cured one day and I won't live with this misery forever. They have discovered something new in Switzerland: that proteins released by the pancreas may start off the autoimmune attack.

  • Isn't it worth to at least try Xiidra if they give you the first month free? Like I wrote above, I'm still on my FREE months supply since I use each vial for more than just one dose.

    Restasis may be free for a year but if it doesn't work then what's the point?

    Also like I wrote above, Shire has a financial assistance program you might qualify for (it's based upon income and I already know I qualify I just need to fill out the application).

    Check out the website for more info.

  • I will definitely contact them and my insurance. But no it wouldn't be worth it because after one month if it worked I wouldn't be able to use it anymore. Restasis takes up to 3-6 months to work so lets see if I can even stick with the program for that. So far at times it is helping me so maybe it will. I want all this stuff to be cheap and for drug companies to stop ripping us off and taking advantage of us because we're sick. There is no reason for them to make billions because people are sick, it's ridiculous and criminal. Thanks!

  • Thanks!

  • Update. I've been on it for 4 months and it has helped quite a bit. My Doc says my eyes look much better and less inflamed. I still have periods of dryness and have to use the moisture drops still but I'm producing more tears and it feels great when I do.

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