Xiidra

[Klee]

Wow how the drug companies gouge consumers. So sad.

[chaka]

Hi - I am new here but not new to dry eye - long time sufferer. I received my Xiidra prescription Monday and have been on it for 2 days. I was on Restatis, and my DR recommended I stop taking Restasis and start Xiidra. I don't think that they really know the best approach with Xiidra yet, and I can't find anything that says that Restatis and Xiidra can or cannot be taken together. I am the only patient in my practice who has started taking it. I will report back in another week, but these first 2 days have been rough - I have seen a significant worsening of my symptoms. It was very difficult for me to get through my work day yesterday. I am on a computer most of the day. A humidifier normally keeps it at a tolerable level for me at work, but yesterday, nothing was helping. I have called my DR who is calling the sales rep for Xiidra to find out if they can let us know if any of the trial patients experienced worsening before things got better. I am not sure we'll find out, and I am not giving up yet. I will update when I have a little more experience with this or more information.

[wsdryeye]

August 30, 2016 picked up a free sample box of Xiidra from my optometrist (20 single use containers.) Received a "welcome guide" with a "Xiidra Iinsider" card that is supposed to give a discount at the pharmacy. My CVS pharmacy doesn't have the drops in stock but is getting them for me.
Used my first drops last night and again this morning. Be sure to hold the container upright when opening - mine spilled. I had burning, itching and tearing for about an hour and my eyes continue to itch a little. Mild bad taste in my throat.
Had a little left over to use next time which my doc said was ok to do. The cap did not fit back on the top.

[Amyfloor]

I definitely am experiencing the burning and tearing after installation of Xiidra. Never had this with Restasis, however, never had any success with it either!!

[BMR777]

Hi - I am new here but not new to dry eye - long time sufferer. I received my Xiidra prescription Monday and have been on it for 2 days. I was on Restatis, and my DR recommended I stop taking Restasis and start Xiidra. I don't think that they really know the best approach with Xiidra yet, and I can't find anything that says that Restatis and Xiidra can or cannot be taken together. I am the only patient in my practice who has started taking it. I will report back in another week, but these first 2 days have been rough - I have seen a significant worsening of my symptoms. It was very difficult for me to get through my work day yesterday. I am on a computer most of the day. A humidifier normally keeps it at a tolerable level for me at work, but yesterday, nothing was helping. I have called my DR who is calling the sales rep for Xiidra to find out if they can let us know if any of the trial patients experienced worsening before things got better. I am not sure we'll find out, and I am not giving up yet. I will update when I have a little more experience with this or more information.

I found an article that talks about Xiidra and Restasis and whether you can take them together. They suggest the two can be taken together: https://www.reviewofoptometry.com/ar...-hii-to-xiidra

I would be curious about whether things get worse before getting better as well. I have seemed to notice things got slightly worse after starting Xiidra, but this usually is off and on for me so I don't know if that's the Xiidra or the time in front of the computer every day.

[pacattack81]

I came this post to see how other people were doing on xiidra. I'll start out by saying my united healthcare policy from work doesn't cover the drug. I called them and they want you to take restasis instead, which is odd because they are both prices the same. The person on the phone had the nerve to tell me restasis has a better formula. Absurd I know, but I wasn't going to argue. She's programmed to say what they tell her.

I've been taking it for 2 days and I too have seen a worsening of symptoms. It's literally instant dryness after putting them in. I've tried restasis before and although it didn't help I didn't feel the instant dryness that I get with xiidra. I feel as if something is in my eye, but there isn't. I get this feeling much more often than I did before xiidra. When things were at it's worst, I would be able to hear eyelid clicking when it was really quiet. I haven't had eye clicking over a year, but I do now. Apparently if you Google eyelid clicking it's a sign of dryness.

The one person who said this was lubricating makes me seriously wonder how one person could feel lubrication and another can feel the exact opposite. From reading posts on this message board I know some people have a good outcome and some don't so I wouldn't base your decision on trying it from a few negative posts. Who knows, maybe things will improve. If they do I will let you all know.

Just to let you all know xiidra is offering a coupon where the first script is free and up to $250 off for the next year so everyone should at least try it. If your insurance covers it then it's only $20 per month with the coupon. FU United Healthcare for not covering it is all I have to say. Xiidra's trial results are significantly better than restasis. To say sorry go take restasis instead is BS.

[pacattack81]

What has insurance coverage been like for all of you so far? My UnitedHealthcare policy doesn't cover it. Do any of yours? Maybe it takes time before a new drug gets covered by insurance.

[chaka]

Pacattack you and I are having the exact same experience with Xiidra. I have felt my eyelids sticking together almost by later in the day. I am on day 3. Today is marginally better because I am not at work in front of a computer all day. I will say that the burning when I do the evening dose is very painful and long lasting. I am still not giving up and plan to use it through the weekend to see if I adjust. My doctor did speak with the Xiidra rep yesterday, and she said that my experience is not something they have documented from the trials. Its really a personal choice for me whether or not to continue, and for now I am because there are so few options available. I have Aetna, and they covered it no problem. Everyones experience will vary, so I think its worth a try for those dissatisfied with their current treatment. I will post again after a longer period of time on Xiidra.

[pacattack81]

Pacattack you and I are having the exact same experience with Xiidra. I have felt my eyelids sticking together almost by later in the day. I am on day 3. Today is marginally better because I am not at work in front of a computer all day. I will say that the burning when I do the evening dose is very painful and long lasting. I am still not giving up and plan to use it through the weekend to see if I adjust. My doctor did speak with the Xiidra rep yesterday, and she said that my experience is not something they have documented from the trials. Its really a personal choice for me whether or not to continue, and for now I am because there are so few options available. I have Aetna, and they covered it no problem. Everyones experience will vary, so I think its worth a try for those dissatisfied with their current treatment. I will post again after a longer period of time on Xiidra.

I think it's more painful for you in the evening because that's when your eyes are most dry. The drier your eyes the more you're going to feel it sting. Sting on application is a common side effect, but it shouldn't last very long. You should try putting a vial in the refrigerator and seeing if that helps it burn less. I did that with restasis after some people recommended it would burn less if I did. The fridge was definitely the way to go for restasis.

I've only been using it at night so far until I feel like it's not totally drying me out. Today it felt like a more normal dry eye day so maybe the extra dryness won't last. Try skipping the morning dose and use it at night right before you go to bed. This way if it bothers you you'll be able to just sleep it off. There aren't many options out there to try so I'll give this a whirl until I absolutely can't take it anymore. Hopefully it doesn't get to that point.

Good luck.

[Klee]

I came this post to see how other people were doing on xiidra. I'll start out by saying my united healthcare policy from work doesn't cover the drug. I called them and they want you to take restasis instead, which is odd because they are both prices the same. The person on the phone had the nerve to tell me restasis has a better formula. Absurd I know, but I wasn't going to argue. She's programmed to say what they tell her.

I've been taking it for 2 days and I too have seen a worsening of symptoms. It's literally instant dryness after putting them in. I've tried restasis before and although it didn't help I didn't feel the instant dryness that I get with xiidra. I feel as if something is in my eye, but there isn't. I get this feeling much more often than I did before xiidra. When things were at it's worst, I would be able to hear eyelid clicking when it was really quiet. I haven't had eye clicking over a year, but I do now. Apparently if you Google eyelid clicking it's a sign of dryness.

The one person who said this was lubricating makes me seriously wonder how one person could feel lubrication and another can feel the exact opposite. From reading posts on this message board I know some people have a good outcome and some don't so I wouldn't base your decision on trying it from a few negative posts. Who knows, maybe things will improve. If they do I will let you all know.

Just to let you all know xiidra is offering a coupon where the first script is free and up to $250 off for the next year so everyone should at least try it. If your insurance covers it then it's only $20 per month with the coupon. FU United Healthcare for not covering it is all I have to say. Xiidra's trial results are significantly better than restasis. To say sorry go take restasis instead is BS.

I have United health care with a high deductable..ugh

[Klee]

Probably caus they still consider it experimental. I only have to pay a 6000 deductable before they cover anthing. Crap ins through work. Need to move to Norway.

[treatright]

Hi guys, I have a month sample of the new Xiidra dry eye med (quick background: ocular rosacea, severe dry eye for two plus years, 52 years old, wear Ziena goggle glasses most of the time, tried restasis four months=torture) and I am on day 14 today. While super irritating to put in the first few days, I saw results, wind irritation way down, and a few bright spots during the day where my eyes were not red, I looked human, pretty excited. Irritated but excited. Then as the days went by, more and more irritated, tried diluting the dose with my fave go to Theratears pf drops, but it's to the point where I am thinking of quitting after I talk to my eye doc today. There is no longer any benefit to my eye to take them, just redness and high irritation. So sad, I can't tell you. My hunch is the drug liftigrast would be great for me, but the other chemicals Shire is adding for ph etc like:sodium chloride, sodium hydroxide and/or hydrochloric acid, etc are the irritating factors for me, some of which are in restasis as well. I wish I wish wish that the drug companies could deliver a great drug with out all the stuff that makes so many of us with sensitive eyes I'll see what doc thinks, maybe has a solution?! Let me know what you all think if you try them!

[bunnyrabbit123]

End of the first week on xiidra for me too. Luckily, I didn't pay for the 30 day sample (you all should know that you can get a 30 day trial for free and assistance for the rest of the year and right now you can have my remaining sample if you want- I've decided to quit. It's not helping, the burning and irritation are too much. Very disappointing!!

[chaka]

Hi - I wanted to update on my experience with Xiidra as I have come a long way since the first week when I posted of my difficult experience. I have been on Xiidra twice a day for almost 3 weeks and do see significant improvement. There are hours of the day (even when at work on my computer) when I don't notice any discomfort with my eyes. I am feeling very hopeful and optimistic. I was on Restasis for 3+ years, and I can't say that I am sure it ever helped me other than acting as an eye lubrication when I first put them in. The Xiidra was very uncomfortable for the first week, and the evening dose is still stinging more than the morning, but it is so much better than when I posted previously. Also, I have one eye with a plug and one eye without. One of them fell out during the first week of using Xiidra (probably because I was rubbing my eyes a lot), and I haven't noticed any difference with it out, so for now, I am leaving the other in to see if there ends up being any difference that I can feel. Xiidra was not tested with plugs, but I am sure plenty of people have them. If you have access to Xiidra and Restasis hasn't worked for you, I definitely think it's worth a try. I can't say my eyes are perfect, but I do feel so much better. Just be prepared for a rough transition the first week or so.

[wsdryeye]

Day 18 using Xiidra. No dramatic changes (yet) but I think I might be experiencing a little more tearing. I still wake up not being able to open my eyes without using drops, but I notice my eyes tear up a few times a day. My eyes still dry out at night when I'm reading - so improvement there will be the real test.

At first I had a terrible time with the burning from the drops. That got better after I started using Systane or other soothing drops 30 minutes before and after using Xiidra. Still burns when I put the drops in but the burning doesn't last all day.

Wish someone from the test group would post so we know how long it can take to kick in. So little info out there and no one to ask. But I'm happy to be a Guinea pig for those who haven't tried it.

(BTW - I tried Restasis twice and it didn't work for me)