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Xiidra, the latest dry eye drug

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  • lobiroxy
    replied
    Does anyone find it so frustrating to get the liquid out of the vial on the first try? I have been a lifelong user of individual dose eyedrops (from Refresh vials since the early 90's and a former Ophthalmic Asst so I'm not an idiot....I know how to put drops in my eyes and the eyes of thousands of patients). What is wrong with Xiidra's drop delivery--is there some type of air bubble or something? I look up at it unblinking and the minute I'm taking it away from my face to investigate it spills down my cheek. This is the same song and dance EVERY day!!!

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  • vannyvv
    replied
    I had been managed on Restasis for years but decided to try Xiidra to see if I could get better results. After 1-2 weeks of xiidra my left eye began watering NONSTOP. I started getting redness on my skin around my eye from the irritation of constant tears falling out of my eye. I blotted with tissue as much as possible. I continued for a week as annoying as it was, hoping this would get better with time, but it didn't. I then discontinued Xiidra at week 3. It is now 8 days later and my left eye is still watering constantly . Has anyone had this issue with Xiidra and then stopped? How long did it take to get better and how long were you on the Xiidra?

    To note, I tried xiidra several months ago and the same thing happened but at that time I stopped after a few days of excessive tearing, and the tearing subsided quickly.

    I am just quite worried that my eye is still tearing so much after stopping Xiidra. and the watering is not due to dry eyes because I've continued on restasis.. I do see 5% of patients have excessive tearing from xiidra from the drug profile info. but it makes me worry that it is still happening 8 days after stopping! what if its a permanent side effect. would welcome any feedback from anyone who has had similar side effects!

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  • chameleon
    replied
    I had posted about my mom's ear problems possibly being related to Xiidra but I think i was mistaken.... I found out she didn't start Xiidra until after the main ear problems. I'll update if any significant developments.
    Last edited by chameleon; 28-Apr-2017, 22:24.

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  • Deb
    replied
    My doctor gave me Xiidra at my request. I have used Restasis for about 10 years but I have never been convinced it helped. I made the switch two days ago but since it takes at least 2 weeks to work, I wonder if I should stay on Restasis for two weeks, as well. I am only the second patient my eye doctor has given Xiidra to, so he has little experience with it. Can anyone who has made the switch tell me if their eye doctor had them continue Restasis for the first two weeks of using Xiidra, or did you just switch from one to the other?

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  • No tears in ATL
    replied
    Originally posted by Mawsky View Post
    No tears in ATL I'm very reluctant to try this new med now, as like you I'm a severe case, basically I'm no tears here too, I literally can't even cry a tear, it's been about 6-7 years now. Crazy as this sounds I never wore contacts before my dry eyes, I wear them now because my eyes feel better with them, I need corrective lenses but basically I'm wearing them as a bandage contact. After my experience with restasis I never want to go through again! Hopefully there will be more help for this condition that compromises so many of our lives, and I hear you people just don't have a clue about it, it's effect on my life is much more than others understand, im even limited on my driving as no more freeways for me, I've almost killed myself putting drops in at 60 MPH, wish you the best and hope your eyes recover from this med soon.
    Mawsky, Restasis was pretty awful for me as well. All I can say is that humidity is always your best friend. They make some pretty neat car humidifiers these days. Goggles are an option, too. Please do not put drops in while on the road (obviously, you know by now)...we would miss you terribly on the forum if something ever happened!

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  • No tears in ATL
    replied
    Originally posted by janeliz View Post
    I have been on Xiidra since October 2, 2016. I am still miserable. I also started Restasis before that - on September 9. So I am doing both right now. I cut down the xiidra to once a day, because my eyes were very (mucusy?). But I'm going back up to 2 doses per day. I'll try anything. I put Xiidra in one eye, then wait 1/2 hour to do the other eye. That is because everything is blurry for about 1/2 hour after putting a drop in. Can Restasis and Xiidra be used simultaneously? -signed, Sitting-by-a-humidifier.
    Janeliz, I really do not know. My first instinct is to say that Restasis and Xiidra fight different types of inflammation. So until you know what type of inflammation you have (and most of us don't) I would say to stick with the one that makes you feel better. I know, "trial and error" is the last thing you want to hear right now....

    I checked with my doc and asked directly, "What type of dry eye did your patients have who reported success with Xiidra? Low, moderate or severe?" That could give you some idea.

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  • janeliz
    replied
    I have been on Xiidra since October 2, 2016. I am still miserable. I also started Restasis before that - on September 9. So I am doing both right now. I cut down the xiidra to once a day, because my eyes were very (mucusy?). But I'm going back up to 2 doses per day. I'll try anything. I put Xiidra in one eye, then wait 1/2 hour to do the other eye. That is because everything is blurry for about 1/2 hour after putting a drop in. Can Restasis and Xiidra be used simultaneously? -signed, Sitting-by-a-humidifier.

    Leave a comment:


  • Mawsky
    replied
    No tears in ATL I'm very reluctant to try this new med now, as like you I'm a severe case, basically I'm no tears here too, I literally can't even cry a tear, it's been about 6-7 years now. Crazy as this sounds I never wore contacts before my dry eyes, I wear them now because my eyes feel better with them, I need corrective lenses but basically I'm wearing them as a bandage contact. After my experience with restasis I never want to go through again! Hopefully there will be more help for this condition that compromises so many of our lives, and I hear you people just don't have a clue about it, it's effect on my life is much more than others understand, im even limited on my driving as no more freeways for me, I've almost killed myself putting drops in at 60 MPH, wish you the best and hope your eyes recover from this med soon.

    Leave a comment:


  • No tears in ATL
    replied
    Originally posted by PotatoCakes View Post
    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.
    Thank you, potatocakes. I took Xiidra for 5 days and my eyes started to degrade at that point. It sounds like a small window of time, but I know what inflammation looks like and I didn't want to risk it further. I have a job, after all, and I can't risk missing days to recover.

    I have no idea whether once a day would do any good, so I'll check. The self consciousness may never go away. I deal with colleagues, customers, and clients more than ever. Many times I get the comment over whether or not I am "tired," "sleepy," or "bored." My eyes reflexively droop just a bit when they are dry, especially in the afternoon, so I feel as though I have to explain myself and give the whole dry eye explanation. On top of that, I can't wear eye makeup in order to look more "awake." It's exhausting, and people look confused when I even talk about dry eye. Geez, we need a "Dry Eye for the Cure 5K," or something.

    Mawsky, sorry I can't figure out how to double quote here. That said, I don't want my experience to discourage you. Please keep in mind that I am a severe case of dry eye. Restasis did not work for me, and burned as you described, but limiting contact lens use could be helpful. I wore contacts for over 20 years, and the Oasis brand was part of my daily wear, and although not entirely proven, my docs seem to think this contributed to my dry eye. Also, keep in mind that glasses are pretty fashionable now. : )

    I wish you the best.: )

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  • Mawsky
    replied
    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

    Leave a comment:


  • PotatoCakes
    replied
    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.

    Leave a comment:


  • No tears in ATL
    replied
    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 problems....life could be much worse, I suppose. Sorry for the vent.

    Leave a comment:


  • PotatoCakes
    replied
    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.

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  • No tears in ATL
    replied
    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.

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  • No tears in ATL
    replied
    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.

    Leave a comment:

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