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Xiidra, the latest dry eye drug

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  • Xiidra, the latest dry eye drug

    I'm in my first week of use so I don't know if it will work for me yet but I thought there are those of you who might be interested with my experience so far.

    If you're not familiar with it, here's the company website:

    It's very similar, in use, to Restasis. Right down to the side effects. I haven't experienced the funny taste in my mouth but the drops DO sting, particularly when I've had a bad eye day.
    It's applied in the same manner, a drop to each eye, twice daily. The packaging is a bit fancier than Restasis but, IMO, it's just material waste rather than anything useful.

    I am under the impression that it can take up to 6 months for it to work and that about 15% of the dry eye population will have success, based on trials. I don't know if I read that or heard it so take it with a grain of salt but if true, it mirrors Restasis both in how long it can take to work and the approximate percentage of people who will have success. I'll probably stay on it for about a year and if it doesn't work after that, there's no reason to deal with it.

    Like Restasis, it's a good idea to keep your eyes closed for 2 minutes after application. The longer I can keep my eyes closed, the more the stinging goes away so I usually put it in a half hour before I get up in the morning so I can lie there with my eyes closed. Wait 15 minutes before putting in contacts or other drops.

    How to obtain & insurance info...

    My doctor mentioned Xiidra to me, which worked because I had planned to ask about it after hearing about it via media.

    He called a prescription into my pharmacy and gave me a sort of welcome packet from the company. From there, I needed to call the drug company. That was relatively painless. When you call, you'll need your insurance card, with contact info. From there, the Xiidra people call your insurance company to find out whether you are covered and what that coverage entails and then they call you back (it takes about a week but you can go pick up your free month long trial prescription during that time -- don't forget the card attached to the welcome packet). In my case, my insurance does cover Xiidra but it's a $30 co-pay so my out of pocket is $1 per day if I stay on this drug.

    The reason they do it this way is that the FDA *just* approved Xiidra and some insurance companies need more hand-holding re: approval, etc. Overall, as a patient, I found the process fairly simple. The person I spoke with at Xiidra was very nice. I didn't have any questions so I'm not sure how knowledgeable they are. I was told that if your insurance company does not cover it, there may be other programs where Xiidra can help you with the cost.

    My doctor warned me that the vials contain just barely enough of the drug. He wasn't kidding. They very consciously designed them for 1 time use (unlike the Restasis vials where you can get at least 2 uses). They cannot be re-capped and IF you do end up with extra, half the time you end up getting it everywhere but your eye in an effort to get it out. At least that's my experience because I have tried to get a morning and evening use out of the vial. I have not been successful yet (I'm on my 5th day). Marketing is key though and the welcome materials tell you cheerfully that they included extra solution in each vial in case you miss. My doctor told me they are actually required to have a bit of extra in there and trust me, they cut it really close.

    That's all I can think of for now. If you have any non-medical questions, feel free to ask. I'll do an update down the road or sooner if I have any striking results.

  • #2
    Do you know if it's approved in Canada yet?


    • #3
      Originally posted by Faith1989 View Post
      Do you know if it's approved in Canada yet?
      I'm sorry, I do not know if it's approved in Canada yet. It was only just approved here in the U.S. You're doctor or Xiiadra would probably know.


      • #4
        Hi Potatocakes,
        Your assessment of xiidra is right on- the stinging is killing me and right now, I'm thinking this is going to be a lot like restasis in that it will be effective for a small group of people-it's annoying that they've put such a tiny amount of the drop in each vial. a marketing tactic to prevent you getting more than one use from each vial. I'm 2 weeks in and glad that they made the first month free as this now seem to be one more thing that's not for me-at least this time I didn't have to spend any of my money to find this out. I hope it works for you, though-keep posting on how you manage. I'd be really interested to know if I'm just a difficult case or if this is something else that's been hyped to be more than it is


        • #5
          heard VERY positive things about this on the dry eye facebook page as early as 2 weeks in, everyone is different though. keep us updated
          People have recovered, so can we.


          • #6
            Start Date: Sep 16, 2016. Today: Sept 25, 2016 (9 days)
            So far, no results that I'm aware of. Application seems to sting less than it used to. I still get quite a bit of gunk after putting the drops in, not my favorite thing but a warm washcloth helps.


            • #7
              Same here, using it for about a month and I have had no noticeable improvement I will let my corneal doc advise me when I see her in a couple of weeks.


              • #8
                I just missed a month of use and I've discontinued the Xiidra. I've been feeling like my ears are 'full' since I began using Xiidra and yesterday, I finally dug out the side effect list and checked the non-common effects. One of them is sinusitus, which occurs in about 1-5% of users. I'm not positive that my ear issue is related but I called my doctor yesterday and given that I'm having no positive effects, he said there was no reason to continue using it.

                Last night was the first night I didn't use it and I have to say, it was the first night, since, that I didn't wake up in the night, with my eyes, particularly my right eye, which has been drier lately, hurting because they felt so dry. My right eye was drier when I started the Xiidra and while using it, I was having more discomfort throughout the day and night, unless I was able to access my serum drops regularly (my usual, on-the-go remedy, Refresh Plus was not cutting it).

                No improvement with my ears yet but I've only been "off" it for 2 applications so far.


                • #9
                  Update - my eyes feel so much better now that I'm off Xiidra. My dry eyes are still there, of course, but most of the side effects from the Xiidra have disappeared and I'm very glad I made the decision to discontinue the drug. My left ear is still a bit "full" but much better than when I was taking the Xiidra. Guess I'll have to wait for the *next* dry eye drug to hit the market.


                  • #10
                    Originally posted by PotatoCakes View Post
                    Update - my eyes feel so much better now that I'm off Xiidra. My dry eyes are still there, of course, but most of the side effects from the Xiidra have disappeared and I'm very glad I made the decision to discontinue the drug. My left ear is still a bit "full" but much better than when I was taking the Xiidra. Guess I'll have to wait for the *next* dry eye drug to hit the market.
                    PotatoCakes, sorry to hear that this didn't work out for you. I am on my second day, so it's hard to say. I posted my experience over on the Patients and Pros forum.

                    The cost is really discouraging, but the Xiidra staff are helping me try to get it on my insurance plan's formulary. It could take awhile, though.

                    I find this medication burns a lot less than Restasis, and pretty much everything burns me terribly, including regular re-wetting drops. They have a bit of a "salty" feel, which is no surprise, since sodium chloride is one of the ingredients, so I see how they could sting at the end of the day when eyes are drier.


                    • #11
                      Day 4 is starting to suck. Burning and redness. Had to break out the lotemax. Please tell met his gets worse before it gets better.


                      • #12
                        I wish I could tell you it will get better -- it didn't for me. There were days where I thought it was better but overall, it made my eyes feel worse, longer. My right eye would feel like sand was in it, nearly all day. I ended up using my serum drops a lot more frequently as they were the only thing that provide a little bit of relief. I made it nearly a month before giving up, so thankfully, I didn't spend any money. Since I managed to get 2 uses out of some of the vials, I still have some left - I feel guilty just tossing them.


                        • #13
                          Glad it isn't just me, then. I wonder if these just simply wash away whatever good oils are left, comparable to my experience with just about ANYTHING that goes in my eye. I may give them a shot just once a day in evening before bed to see if that makes any difference. This kind of depresses me, because I was initially so hopeful.

                          11 years into this, and I'm still pretty self conscious about the appearance of my eyes from this condition and feel pretty limited in career choice. I know, first-world could be much worse, I suppose. Sorry for the vent.


                          • #14
                            No tears in ATL - Of all places to vent, I think you're safe here
                            How long did you say you had been on Xiidra? Before you cut down to once a day, I'd check with your doctor. He/she may know if they did any testing on once a day; if they know they won't work on once a day, no reason to go down to once a day. I don't think they are washing the good oils away but whatever inflammatory response they attack, it certainly didn't help me. I've given up on my eye appearance. Or maybe I'm just used to the red. My serum drops really help but my eyelid inflammation isn't affected by them. Plus, always putting drops in my eyes, it bothers some people. I can't worry about that though. My job is to take care of my eye health, not worry if someone cares if I'm not wearing makeup or that my eyes are red or that I have to put eye drops in constantly.


                            • #15
                              Oh this is so discouraging, had really hoped they put something out there that would truly help this time, I tried restasis 3 separate times and it always made my eyes worse! The burning was unbearable, and my eyes were horrible. Sounds like your experiences were the same as mine on restasis. It's been a rough year with my eyes, but at times my eyes are much better, this is where my hope is. I'm still using my acuvue oasis contacts, as my eyes are so much better with, and putting drops in constantly, and holding on to those days it's so much better