Xiidra

[shoebox]

Just saw commercial for Xiidra, first time I saw the actual product commercial instead of that eyelove business. I have tried Restasis twice and failed both times. I've got upper and lower plugs in both eyes, and my eye Dr was very excited to give me a pamphlet for Prokera due to my "significantly damaged ocular surface". The idea of Prokera freaks me out. I have a standing script for Lotemax of course, and I've tried...some things that are extreme for me (but probably not for some of us) (light therapy to my face that felt like my skin was being shocked and burned at the same time to try and "melt" any old oil that was clogging the glands? Followed by "gland expression" where I thought I might just scream? Never. Again.)
Tempted to call eye Dr tmw and discuss Xiidra. Haven't been in the board in awhile, but knew I could count on you all for info! Nervous to try anything anymore. Got tired of spending crazy money to be disappointed. Sigh.

[chaka]

I had reported great results with Xiidra in October, and I am continuing to have the same experience. This has truly changed my life! To answer the question about my diagnosis, I have Sjogrens but am not fully symptomatic. It appears that so far, only my eyes are affected. I have also been diagnosed with MGD. My dry eye symptoms started around 2009 but reached a critical state that was impairing my functioning in 2014. I had been on Restasis for many years. Hope this is helpful.

[DocwithDryEye]

Sorry I've been away so long. Wow. About a year since I posted anything.

I've had great success with Xiidra (I do not work for the company, nor do I consult or have an financial interest in Shire)

I've been on Xiidra for 2 months now. I noticed an improvement in my own symptoms (dryness, redness, irriation) within 2 weeks. While on Restasis for 6 months (about 2 years ago), I didn't notice any of these benefits. While the drop does sting for about 10 seconds when I put it in, blurs vision for about 5 minutes, and does have a metallic taste, I've been very happy with it.

I have about 60 patients on it now, and all have noticed some benefit. Some 30% better, some 60%, all rough estimates, but all patients have been very happy I prescribed it. The free 1 month supply always helps too!

It is true that we don't know for sure who this is best for, who it's not best for, how it works with Restasis, if its better then Restasis, etc etc. There is no way to know with the drug being so new. However, as it works in a similar way to Restasis (acts on the inflammation cascade, just on a different mediator of inflammation), it should work well in conjunction with Restasis.

Again, with 1 month free, it's worth contacting your optometrist or ophthalmologist to see if you are a good candidate, and if you can get the 1 month supply card.

[MGD30]

I have about 60 patients on it now, and all have noticed some benefit. Some 30% better, some 60%, all rough estimates, but all patients have been very happy I prescribed it. The free 1 month supply always helps too!

Thats interesting that you say that. I called the the manufacturer and they said something similar (that all felt an effect) for the trials they conducted. But if you were to look on this forum or the facebook group you would think that the opposite is true; that it does not work for most, including myself. I have been taking it for two month and cannot tell a difference.

Im guessing that sample population on this forum is much different than the trial subjects in the severeness of the disease. Maybe it does not work for people that have more intense pain. Have you given it to patients with severe pain? Just to give you a reference point of when I say severe: I cannot even function without moisture chamber glasses, I would have to close my eye after about 10 mins of taking them off.

[DocwithDryEye]

Thats interesting that you say that. I called the the manufacturer and they said something similar (that all felt an effect) for the trials they conducted. But if you were to look on this forum or the facebook group you would think that the opposite is true; that it does not work for most, including myself. I have been taking it for two month and cannot tell a difference.

Im guessing that sample population on this forum is much different than the trial subjects in the severeness of the disease. Maybe it does not work for people that have more intense pain. Have you given it to patients with severe pain? Just to give you a reference point of when I say severe: I cannot even function without moisture chamber glasses, I would have to close my eye after about 10 mins of taking them off.

Thanks for the post MGD30. I think it's very important that all aspects of dry eye for each and every patient be assessed. Aqueous, MGD, biofilm, inflammation, blepheritis, etc. I honestly feel some docs who don't specialize in dry eye may just throw Xiidra at a patient, just because it's something new. It's not for everybody. And if you are not addressing the other things I mentioned above, very likely the patient won't notice a difference. Can't speak for any patient I haven't seen myself! Dry eye is just so multi-factoral. Xiidra is not the panacea of dry eye. And we should not be stating that it is. It's just another option in our full arsenal of dry eye care.

[thess]

Getting this out of the way early: yes I only have one post (as I type) but I'm not a shill.

I've been a lurker since early 2014, when I was initially dx with MGD. There were a rough few months because I got the standard 'warm washcloth' advice from three different eye doctors (two of them in the Duke network), and I didn't understand what it should feel like when the glands unclogged. If just one of those doctors had said "You'll know it's working when your vision gets blurry", it would have spared me at least a full month of misery. (For me, warm washcloths don't apply enough pressure--I never managed to get the glands flowing again until I got a Thermalon microwave bead-style mask. The band was very tight at first (I just hadn't adjusted it), and those particular masks are hefty, and I noticed a blot of blurriness in one eye after using it. Because, duh, I'd actually gotten some glands warmed up enough AND unclogged. I also noticed that eye felt so much better.

So since then, the situation has been pretty manageble with daily heat/pressure and occasional ointment, except in the very driest of weather or if I have to be in a car with a/c running for a long time (then it can get pretty miserable). As such, I had no real reason to post, especially since I have a pretty mild case (comparatively, although it didn't feel mild for the first two months). But I've lurked enough to spot some of the shills and shady posts, so I know I'll look like one if I have a good outcome with Xiidra (don't know yet).

Anyway, saw my normal eye doctor yesterday for glasses prescription update. (She's one of the three who saw me for the dry eye--her approach was to put me on bepreve drops.) Anyway, I mentioned that my dry eye was manageable but that my light sensitivity and after-images were getting really bad. (I have to spend many many hours in front of screens. No way around it.) She mentioned Xiidra. I told her I'd already read about it (I had, here) and that it didn't seem like it was doing much for people. She countered that she uses it herself and has good results, and that a lot of her patients do. She said it would be good for my particular type (I have evap problems, I guess, not lack of tears), and that it works within a few weeks.

I like this doctor, but she works for a large chain that advertises at our local NHL arena. I'm guessing she had sales reps up the wazoo. But she had the cards for the free supply and I told her I'd try it.

I tried it last night, fairly early evening, for the first time. The stinging really wasn't bad at all, nothing compared to, say, chopping onions (which is just about impossible for me these days) or getting soap in my eye. Only lasted a few minutes. Blurry vision came on about 10 mins later, clearly up pretty quickly too, but that heavy/sticky feeling people mention set in. It was annoying but not a deal-breaker. I did wait about an hour and then washed my face (but didn't rinse out my eyes or anything). Oh, and I did get the draining/bitter taste in throat, but still not a big deal (bepreve was about the same, IIRC).

However, I did notice that by the end of the evening my eyes were feeling somewhat irritated in a way that's different from my usual end-of-day dry eye pain. So I was reluctant to try again this morning, as it was a day I couldn't afford to have my eyes bothering me at work. I'll try it again tonight after work and see if my eyes are irritated again at the end of the evening.

If the irritation is manageable or recedes and I can go on the recommended 2x a day schedule, I'll come back and post my results. It should be pretty easy for me to know if it's improving--we have a record cold weather spell coming in, and the heaters at work and home will typically kill my eyes this time of year, and I have to supplement with ointment during the day (rather than just a heatpack when my eyes start bothering me around 7 each night).

The free card worked fine at Walgreens. The cashier told me my insurance would have covered all but $30, and asked me if I still wanted to use the card. I stopped myself from saying "No, I'd like to pay $30 for no reason". My doctor told me to hang onto the card for future discounts, so I did. (Not sure how that stuff works--I've never been on one of these new heavily-marketed medications, I mostly only take old standbys/generics.)

Anyway, if anything of note happens, will report back.

[thess]

Second day update: Tried second application last night. It didn't sting nearly as much as the first application, and at first I wondered if I'd gotten enough in there, but I got the characteristic blurriness in about ten minutes, and then the bitter taste within an hour.

Within a few hours, my eyes were somewhat 'sore' again; again it's different from my dry eye pain (or clogged gland pain, which is also a bit different). It was more like I'd spent too much time in a a chlorinated pool. Eventually it brought on a headache, but this is pretty normal for me with eye problems and I have prescription migraine meds that knock it out.

Didn't have the heavy/gunky feeling as much last night.

Since last night's irritation had been manageable (despite having to take headache meds), tried again this morning. This time I was very careful to do it in front of a mirror and get the full drop inside a pocket of my lower lid. It didn't sting at all this time. That seems kind of weird/unexpected. Don't see how my eyes could have adapted to it in three applications. Also didn't get the blurriness this morning, but did get the bitter taste.

I did some reading of the drug's literature last night, and while I have a basic understanding of the current 'inflammation' theory of disease, I wasn't really able to understand the mechanism of action or how it's supposed to make my meibomian glands work better.

Because my MGD onset at age 43 with a whole other gigantic list of weird symptoms, all within about a year (including becoming a person who suffers migraines after never getting them), I've been assuming I'm just getting a nasty run of perimenopause and I tend to lean towards this eye stuff being related to hormonal changes. (And there's some research out there about hormone eye drops, but of course they seem to be impossible to obtain and I assume there isn't enough money to be made in that approach.)

I feel like it's too early to say whether it's helping, especially while I'm still sorting out the irritation caused by the product itself and may be in a 'placebo' window. But the burning/stinging upon application seems to have stopped entirely. I guess it's important to mention again here that my condition seems on the mild end of the spectrum compared to many posters here (I just have waxy oils, I guess, no complications like Sjogren's or ocular rosacea (that I'm aware of)), so my eyes may just still be better at handling irritants than the people who reported the drops were painful/miserable to use.

[Bibliogirl]

Thess, thanks so much for keeping us updated. I just got a prescription for Xiidra myself, but after reading about issues with visual acuity, have been reluctant to try it yet. Will probably do so after the holidays.

[Green eyed lady]

I have dry eye problem about 5 years. Unfortunately, recurrent corneal erosions brought me into the opthalmologist's office. Nothing helped to heal these, until the doc did amniotic grafting as an in office procedure. It worked! But It was a very painful, uncomfortable procedure to go through. I stayed in the house with the curtains drawn, sunglasses on and no TV on. I was super sensitive
to any and all lights for a full 7-10 days! Once it healed, I was back to the same dry eye situation. So bad, that in the AM my eyelids would stick together. I would have to use tears drops to open them and try to avoid damage to my cornea again.
So, I was ready to try some EYELOVE! I got the sample pack and then the free first month. IMMEDIATELY I felt relief! No more sticking eyelids in the AM. No more real need for any tears or eye drops. It is amazing. The only negative is the eugesia, or bitter taste I get in my throat. This can happen immediately or after several hours. It can happen after I drink a hot beverage. It can happen when I am doing my AM stretch exercises on the mat, there it is...bitter taste in my throat! Even though I last applied the medicine the night before.
Of course my insurance company denied any coverage for Xiidra. They said I needed a trial of Restasis. After they gave authorization, I tried Restasis for one month. I was miserable. No eyelove for me. I was back to sticking eyelids in the AM, burning sensation all day from Restasis. Back to constant use of tears solutions. I went back to my doc, and it was clear that I failed Restasis. Thankfully, I got a 6month approval for Xiidra. As soon as I started back on Xiidra, I felt great again. No more dry eye symptoms. Just nasty bitter taste in my throat. Hopefully this will diminish, or maybe Shire should address and fix the eugesia. Otherwise I am happy, so far!

[thess]

Hello again --

Dropped off updating for a few days, as it seemed like no one was reading this thread. Doing the math, looks like I'm day five or six. My eyes do feel improved (please see post 51 for my backstory, but briefly I have pretty straightforward MGD, which is usually managed with heat compresses). It's the time of year when heaters are always running, and I haven't reached for the ointment since Friday. I'm still doing the warm compresses at night anyway. That said, it's the end of a weekend, and I spent more time in the kitchen than in front of screens. Back at work today, so we'll see how this week goes. I don't think it's been enough time for me to separate a real effect from placebo (something I'm pretty prone to).

Side effects: still minimal. The 'stickiness' is gone. Maybe a tiny bit of very short-lived blurring (overall my vision seems to have improved, as well as a reduction in light sensitivity--but again, it's Monday and I spent the weekend with way less screen use). I barely notice the bitter taste at this point. Yesterday morning I had a moment of 'why does my protein shake taste a little weird?' but it was within an hour of the drops, so ...

It seemed, last week, like there was some irritation that was leading to headaches, but it was also the same week I would typically have pre-menstrual headaches, so again I'll have to see if it continues (it didn't yesterday).

My take-away at this point is that if you're a woman of a certain age with moderate dry-eye due to MGD, and you can swing one of the free-trial cards, there's really no downside to trying this. I almost declined when my doc offered after reading some of the posts here, but the side-effects that had scared me are either not present for me (burning), were only noticeable for the first 2-3 times (sticky eyes, delayed irritation/eye soreness), or represent far less of an impact on my quality of life than the disease does (bitter aftertaste). I am by no means trying to downplay the fact that other people really struggled with side-effects, and all I can do is restate my earlier point, that my eyes aren't that bad (yet) and I have no other complications/auto-immune disorders (that I am aware of).

I have a fairly crappy Aetna plan and they will apparently cover the drug other than a $30 co-pay. Restasis wasn't mentioned. I don't know if the 'discount card' will bring that $30 down or not if I stay on xiidra (I mentioned before but I've never used a drug new and expensive enough to have a 'loyalty card' heh).

[grandsporta]

Hello all,

I thought I'd chime in and let you know how Xiidra has been going for me. I had SJS/TENS 13 years ago so dry eye was a daily struggle for me. I do wear scleral lenses which helps but still had a lot of issues.

I've been on Xiidra now for about 12-13 weeks. At week two, I noticed that I was using a lot less drops however my eye (I only put it in my worse eye which is the right eye) was still getting red daily. So after two weeks, dryness changed but not the redness.

After week four, the dryness came back and so did the redness for about a month or so. Now, for the past four weeks, I haven't had any redness at all. I'm also using a lot less drops. I've gone from using 12-15 droppers (refresh tears) a day down to about 3-5 per day. That is a significant improvement for me. The redness was what bothered me the most however that seems to have gone away.

I play ice hockey as well, so during the hockey game my eye gets red and I have to use about 2-3 eye dropper vials, now I'm down to using less than 1 per game.

Overall, I've noticed a significant improvement in inflammation and dryness however I'm remaining reserved and hope it continues.

If you've just started it, stay on it for at least three months before you decide what to do. I was about to give up but I kept going and I'm glad I did. The drops don't sting at all, unlike restasis which I couldn't be on for more than two days. The bad taste in my mouth after taking the drops have gone away too.

Hope this helps!

[thess]

It's definitely helping for me (see my posts above). Every now and then it seems to give me a headache, but my eyes are doing much better than they normally would in the current cold/dry weather in my area. There are some counter-intuitive aspects to it. Weds, I had taken doses a little too close together and my eyes were sore by the end of the evening and I had a headache, which was worsened when I tried to do my usual heatpack/gland expression. So yesterday morning I was wary of using the drops again, but the heater/fans at work were getting to me and I decided I need to use the drops consistently despite the random headaches. As soon as I put a drop in each eye, my eyes were much happier for the rest of the day. The same thing happened this morning.

My light sensitivity/after-images have gotten MUCH better (I haven't thought about them in days, instead of constantly seeing a negative image every time I blink). This time last year I had a humidifier going in my office and constant ointment use.

Looking at my first post, looks like I'm on day twelve.

In summary:

--Pre Xiidra, MGD with no complications, I have to use heat compresses every night to keep oils flowing. Eyes are miserable in extreme weather, light sensitivity problems. Occasional cheap ointment use. (Expensive drops just irritate my eyes after a while.)

--At 12 days on Xiidra, I'm noticing eye dryness far less, and I sometimes forget to do the heat compress till late at night, because the dry eye sensation that would normally start bugging me around 7pm isn't happening most days--I don't feel that pressure in my glands or the 'need' to use the compress. Prior to xiidra, my eyes would DEFINITELY let me know I needed to do it, every day.

--Side effects minimal except a different kind of soreness that sometimes causes a headache for me. Seems to happen about once every 2-3 days. This is not ideal but I have rx migraine meds that can manage it for now. Keep in mind I am also hitting the 'screens' hard, all day.

I still don't understand the mechanism of action of this drug, and there's very little info about it online (or other people talking about it). I don't understand why my eyes now feel better immediately after application of the drops, and I don't understand why my glands would feel less clogged--I thought it was just supposed to treat the inflammation ('signs and symptons'), not actually help your glands function better or make your oils less waxy, right?

[William53]

Background: 63 year old male. I've had a cluster of chronic issues affecting eyes, lungs & sinuses since the 1980s which sometime combine with hyper-allergicness to make life truly interesting. Diagnosed with MGD and Bleph in both eyes about 14 years ago. My hyper-allergicness is now under control (via blessed immunotherapy) so treatment, meds, etc for DES these days is about managing the chronic conditions. Am now on 10 different meds that either protect me from reacting (lungs, eyes & sinuses) or that minimize extent of reaction. The number of meds and dosage levels have been shrinking over the past coupla years as I'm doing, for me, pretty well. I've been on Restasis for about 12 years. I'm not sure what it does, if anything.

Started with a new ophthalmologist a few weeks ago. He suggested I try Xiidra. Like a lot of you folks, I'm pretty open to ideas that might, just maybe make life more livable. I started administering to the eyes >Just Last Night<. So no real experience yet. I'll post later with updates. My initial reaction is:

• Ouch! Xiidra burns a lot when I first put it in my eyes! and
• My vision is seriously blurred for about 7 minutes after applying and
• As others mentioned, my eyes feel clogged and wet for hours after putting drops, and am definitely getting some foreign object feel in the eyes - again hours later
• So, the one cool result is that my eyes are more wet in the middle of the day. The rest? I hate it.

Thanks to everyone on this thread for your thoughts and experiences. I'm going to keep taking Xiidra for at least a few weeks. See if there's any medium-term benefit in exchange for the annoyance and physical discomfort.

[thess]

Closing in on two weeks. The improvement for me is unquestionable. (Forgot to even do the heat compress last night. Probably not a good habit to fall out of.)

I think I've figured out the pattern that causes the headaches. Usually I take the second day's drop right before bedtime. But some nights after work I know I'm going to be doing more screentime, and because the drops themselves seem to provide some sort of immediate relief, I take the second day's drop on those days around 7pm. Those seem to be the nights I have a headache around 10. I guess it could be argued that it's the extra screentime, but I don't think so. I no longer have the soreness I mentioned upthread (where I felt like I'd spent too long in a chlorinated pool), just the headache radiating from my eyeballs shows up.

Otherwise the only side effect that I still notice is the aftertaste. It's such a non-issue I forgot to put it in my last post.

I am definitely able to get multiple doses out of each dropper, btw. I just pop the dropper into a small ziploc.

William53, I'd be curious to know if the burning on application continues for you. It only happened once or twice for me. Every now and then it feels like I got a tiny bit of salt water in one eye, but generally nothing. (I still don't understand how that effect went away so quickly.)

I can also tell you that the gummy feeling in my eyes only lasted a couple of days.

(I don't consider myself to be 'cured', by the way, I just spend a lot longer at '95%-ish' and have far fewer bad days in my overly bright, overly ventilated office.)

[William53]

Keep in mind, as noted in my recent post to this thread, that I'm just getting started. Here below is the spreadsheet table I'm using to track my reactions, good and bad.

You'll note in the table that today I had a vision blurring issue for 30 minutes. This was for me serious. I was ready to head to the office, but couldn't see well enough to drive. So I basically sat in my living room for a half hour until I finally got some clarity back in my vision. I called my ophthalmologist's clinic and spoke to a nurse. I described the lost half hour and other reactions to Xiidra so far. She said that the blurred vision was troubling, but not in her mind a crisis. She said their clinic is seeing a lot of folks really benefit from Xiidra when they stick with it over 2 or more weeks, altho it's not working for everyone. The clinic recommends stopping Xiidra when the patient is experiencing any combination of sustained eye pain, eye discomfort, itchyness, red eyes, and/or red eyelids. So I'm going to keep using Xiidra for now. I'm to report any extended episodes like the Blurred Vision Fest that occurred today.

Thess - Unquestionable improvement is what we all seek. Congrats! Paying a bit more attention to what I was doing, I realized that the burning accompanying application of the drop was happening when I opened my eyes. Reminds me of Acular, which I no longer take. So now I dab the excess Xiidra liquid with a kleenex before opening my eyes and both pain and duration of pain are minimized.

If folks recommend other side effects I should be watching for, I will add them to the spreadsheet and track. For example, when I woke up this morning - before compresses & lid scrubs, before any meds including eye drops - my eyelids were crazy swollen. This is not at all normal, really unprecedented; I'm adding to the spreadsheet as another item to track. By the time I finished my usual morning routine, the lids looked normal again.

EDIT: My public sector health care plan covers most of my med costs, including Xiidra. For a month's supply I have a monthly copay of $30 and will until about September of each year when I catch up with my deductible and have no copay.

XIIDRA EXPERIENCE_WILLIAM53
	PRESENCE/DURATION OF SIDE EFFECTS
	Eyes	Vision	Foreign	Bad	Good
DATE	Burning	Blurring	Object	Taste	Wet Eyes
12/18/2016_PM	5 Min	7 Min	N/A	N/A	N/A
12/19/2016_AM	3 Min	8 Min	Most of Day	Slight/All Day	All Day
12/19/2016_PM	1 Min	7 Min	N/A	N/A	N/A
12/20/2016_AM	1 Min	30 Min!	Not too bad	Slight/All Day	All Day
12/20/2016_PM
12/21/2016_AM
12/21/2016_PM