Xiidra

[xerieyes]

Hello all. I have been a lurker but decided to join to share my experience with Xiidra. I asked my doctor that I would like to try it and he gave me the script. His only comments were that it worked differently than Restasis and it could take up to 6 weeks to work. Well I started it. I was feeling hopeful from the start because the first 30 minutes to an hour it made my eyes tear. At least they felt moist. I had the blurriness due to the tearing ( I think) for about the first 30 or so minutes. I also experienced the weird taste in the mouth as is listed as one of the side effects. Heck if it worked, I would be happy with any taste or side effect. The taste thing would only last for about an hour or so too. For me, Xiidra was a complete failure. In fact my eyes progressively felt drier. At night, I would wake up with eye pain and my right eye stuck shut. I gave it more time as my doctor suggested but I could no longer take it. In the day my eyes felt like as bad as they ever did. I may go back to Restasis.

[William53]

Just an update. Today is my 15th day since stopping Restasis and starting Xiidra. I've been tracking the same reactions in a spreadsheet that I posted a piece of above. Generally, I'm experiencing persistent, mostly minor side effects while seeing some real improvement with less dry eyes. I have long-term issues with routine tear production and this is the most & most consistent moisture I've felt in my eyes during the day since I can remember. So far, Xiidra >for me< is a success. One of the few in decades of dealing with DES and related issues. (Again, I'm a 63-year old male with long-term diagnosis of Bleph & MGD plus a capacity for hyper-allergicness affecting eyes, lungs & sinuses. My allergies are currently well-controlled so my focus these days is on managing DES.)

Here's a summary to date of Side Effects & Improvement:

Eyes Burning - This seems to vary with sometimes light burning at application and sometimes upon openings eyes after application. Either way, the pain is not severe and never lasts more than a minute or so. A non-issue for me.
Vision Blurring - This is the one side effect that I remain concerned about. The full range of duration for blurring is 7 to 30 minutes in the wake of applying the drops. The common pattern over the last (2nd) week is blurring off & on for 13 to 20 minutes. I've had to build more time into morning routine to allow my eyes to stabilize and clear up.
Foreign Object Sensation - This was an issue the first 3 days of Xiidra use. Stopped on the 4th day and hasn't shown up again.So, now a non-issue for me.
Bad Taste in Back of Mouth - I notice this now & then. It's not persistent or a strong taste. A non-issue for me.
Good Wet Eyes During Day - Yes, yes, yes!
Swollen Lids in AM - This showed up on Day 2 of Xiidra use and has persisted up to today. My lids, expecially my lower lids are kerazy puffed out. But, everyday, sometime in the course of doing my morning hot compresses, lid scrubs, etc they settle down and look normal. If swelling continues like this but also clears up each day, I'm treating as another non-issue.

Best of luck to all of you. I'll report again in a couple of weeks.

[mcleary]

I use xiidra. I think it works a little better than restasis, and costs about the same if you use one vial in the morning and one in the evening. I occasionally have to use another drop mid day if my eyes get dry still. My eye dr said my eyes look a little better with xiidra too. I occasionally open a vial and the drops won't come out. I've learned that if I turn the vial on the side, watching for the drop to gradually go to the side then end, it comes out ok for the one use. Also, I get blurry eyes at first when I use xiidra, because it seems to clear them out more fully. Once the gook makes its way out, my eyes aren't blurry. Sometimes I have to wipe stuff out of my eye corner and under my eye to put on my eye liner.

[Ingrid2309]

Hi guys!

I'm from Norway and I spoke to the only dry eye specalist in this country (at the dry eye clinic in Oslo) about Xiidra. As opposed to Restasis and Ikervis which is covered by the state, Xiidra is not and most likely won't be so if I want to try the drug I have to pay out of my own pocket. The only problem is that the price here is 10 000kr a month, which is essentially $1,000! This is a ridiculous price, I really don't understand why they make it so expensive.

Anyway, my dctor told me it is sold cheaper in the US and that if I have contacts there I could try to get someone to send it to me, I know this is a bit of a long shot, but I'm only 26 and been suffering from this horrible disease for almost 2 years now - getting pretty desperate for relief. Would anyone here be willing to send me some? I'd pay you obviously. I'm not sure if I'm allowed to post this on the forum:/ sorry if I'm not! I just thought asking won't hurt.

[annambur]

I have been using Xiidra for about 4 months. I have mixed feelings about it. It definitely helps, but it bothers my eyes as well. When I use it, which is daily, it makes them inch profusely and they feel like they have sand in them. It also makes my eyes water a ridiculous amount. If I stop taking it, they hurt more. So I guess for now, until I can find something better, I will continue it.

[William53]

Another update. It’s now 6 weeks since I stopped Restasis and started Xiidra at the recommendation of a new ophthalmologist. Generally, to quote my previous post "“I'm still experiencing persistent, mostly minor side effects while seeing some real improvement with less dry eyes. I have long-term issues with routine (basal) tear production and this is the most & most consistent moisture I've felt in my eyes during the day since I can remember. So far, Xiidra >for me< is a success.”" As with any med or treatment, different people will have different responses. (Me: 63year old guy diagnosed w/ MGD and Bleph, chronic eye, lung & sinus conditions, and capacity for hyper-allergicness)

Here's a summary to date of Side Effects & Improvement after 6 weeks:

Eyes Burning – Ranges from zero burning to mild burning sensation for about about a minute. A non-issue for me.
Vision Blurring – This is still an issue. I’ve settled into an average 9-12 minute off and on blurring effect after application of the drops. Same for morning and evening – with exception noted below. I continue to reserve extra time in the morning routine to allow my eyes to stabilize and clear up before driving to work. Once the blurring effect is over, my eyes are fine until the next time I apply Xiidra.
Bad Taste in Back of Mouth – I continue to notice this now & then. Not persistent or strong taste. Non-issue.
Good Wet Eyes During Day – Yes! Every day since starting this drop.
Swollen Lids in AM – This showed up on Day 2 of Xiidra use and has persisted up to today. My lids, especially my lower lids are kerazy puffed out when I wake up. But every day in the course of doing my morning eye routine they settle down and look normal. Non-issue.
Reactions to Periods of Intense Eye Use/Stress – I had a couple of times in January where my job required me to put in long intense days of reading and writing on the computer. My eyes felt more raw and inflamed than usual as a result. On these days applying Xiidra in the evening resulted in extended – like 20 minutes – off and on blurring accompanied eye pain, junk in my eyes, tear over production. This is an issue; I can’t control this aspect of my work so there will be intense work/eye use days pretty much every month. Altho, so far, this happened 4 evening applications out of 84 total (2 X per day X 42 days). So is Xiidra just a Fair Weather Med? Only helping when I’m not dealing with stress and intense use?

Best of luck to all of you. I'll report again in a couple of months. I’m emailing this update to my ophthalmologist to get his input.

[thess]

About six weeks in--still very, very positive results.

The headaches I mentioned in the early days are gone; I use xiidra 2x a day.

Only on the very driest of days do I have to use a little ointment. (maybe 2 x in the last three weeks?)

I still have to struggle to remember tp keep up with the warm-compresses regime because my glands rarely feel 'congested'.

I still get bitter aftertaste (don't care) and a very tiny amount of gunk. Any blurring only lasts a few blinks.

The downsides:

I'm now able to use screens and computers so much more (for things like video gaming) that my long-dormant arthritis in hands has been flaring up.

I'm now able to use screens so much more that I'm just getting good ol' eyestrain. (I'm also at the age where my eyes are deciding which state they like better, myopia or presbyopia.)

Light sensitivity/after-images are still a big problem. I don't see people mention this often with regards to dry eye, and I wonder if I have some additional issue related to a lifetime of too much computer usage.

[Shooter]

Hi all. I was looking for a forum where the people were discussing Xiidra and here I am. I had been wearing hard contacts, with no problems, since before they were well known, 58 years now. Back in August I started having terrible problems with hurt stingy eyes. I did not go to the eye doctor until early November, due to my hard head. Besides having an infection, he said I had developed Blepharitis which caused the dry eye, which has no real cure.
After clearing up the infection with steroids, he had me use face cloths warmed with warm water twice a day for 10 minutes on my eyes and over the counter eye drops for dry eye. I had to wear prescription glasses since after only two hours the contacts were hurting so bad they had to come out. After two months of no relief I went back and was prescribed the Xiidra.

I have been on the Xiidra now just over two weeks. Like most here I went through the initial eye burn with it which had let up quite a bit after a week and a half. Tear flow is good but sporadic yet.
I can wear the hard contacts 4 to 7 hours a day now but begin to feel a bit of irritation usually after 2 to 3 hours. I still use the warm face cloth twice a day before using the drops and dry eye, eye drops about 4 to 6 times a day.
So, so far I do see some improvement and I really hope the improvement continues.

[shakenbake]

Hey Thess!

First of all, thanks for sharing your experience with Xiidra. I often feel somewhat guilty because I've definitely benefited from posts on this site but never have shared my experiences. So thanks for taking the initiative. I definitely appreciate it!

I've been on Restasis for about 6 months. Along with heat compresses, lid scrubs, vitamins and plugs, I've improved significantly. Still not 100% so my doctor prescribed Xiidra.

I've only been on Xiidra a few days, but I already notice an improvement in my symptoms; however, I've been getting migraines pretty consistently since starting the drug. I know it's the Xiidra because I'm really particular when I start new medications: I never introduce more than one variable at a time so I do everything else exactly the same!

Your last post mentioned that your headaches have gone away? How long did that take? I'm worried because I've been less effective at work for the last few days as I battle with the headaches, but I really want my eyes to get better.

I know that when I started Restasis, I had tons of side effects that eventually dissipated and it was DEFINITELY worth dealing with them for the first month, but Xiidra is so new that there's really not a ton of information on it yet.

Anyway, I was just wondering if you could speak a little bit more to your experience with the headaches. Like I said, I'd deal with pretty much any side effects short term to get my eyes feeling good.

Thanks so much!

[Shooter]

I continue to see a slow improvement using the Xiidra. I can wear my contacts up to 8 hours with some discomfort but by taking the contacts out about 4 hours into the wearing, and washing my eye lids with baby shampoo and cotton balls it really helps them..My eyes feel heavy when I wake up but they don't ache as much. Still using warm wash cloth twice a day, prior to using the Xiidra. Very little burning from the Xiidra now also.

[Shooter]

Contact lens wear has increased to 8 to 10 hours But that is mainly due to me taking the lenes out after 4 to 5 hours and wiping the eyelids down with baby shampoo and cotton balls. Also adding eyedrops for dry eyes at that time. I received my BRITISH Clinitas Soothe drops today. They seem to be the best eye drops I have ever used and I have tried a lot of them. Glad I found the post about them here. Bought them through Amazon...tookover two weeks to get here.

[Shooter]

Now wearing contacts 8 to 10 hours straight. Using eye wipes once during the wear and Sooth drops once or twice. Still using heat then baby shampoo wash before using Xiidra in the morning and also after taking lenses out at night. Little to no burn from the Xiidra. Now 8 weeks into xiidra use.

[DJenn]

I have been suffering from dry eye syndrome for about 20 years. I have punctal plugs and was prescribed Restasis when it was first available but am now using Xiidra. I had no side effects with Restasis - no burning or blurred vision, and one vial lasted for 2 uses. With Xiidra, I experience a lot of burning, itching and blurriness upon application, but it eventually subsides and I have become used to it. I thankfully do not have the unpleasant taste sensation that some have reported. With Xiidra I have found that I don't need to use supplemental eye drops as frequently as I did with Restasis. I do still have some Restasis vials left, and am wondering how to take them both at the same time as some of you have been doing. Please elaborate how you do this - I would like to see if using both together might help with the inflammation I also experience. Thank you!!

[dianeidaho]

Hi,

I have been looking at this site for 4 years and it has helped me so very much. I got dry eye about 4 years ago. It got so horrible at one point that I really did not want to live any longer if it continued so intensely. I went to many doctors and tried so many things. Medications, supplements, warm compresses, I wore goggles all the time, I put every imaginable drop in my eye. It is not completely gone, but here is the one thing that seemed to make the difference....hormones. It took a while to get a doctor to take me seriously, that hormones might be causing the problem. But finally one PA finally tested ALL of my hormones and I was WAY below normal on Testosterone and DHEA. I am a 55 year old female, and yes, we still need testosterone. Anyway, I won't bore you with the combinations that I took along the way over the past 1-2 years, but this is what I am taking now. 10 mg of DHEA in the morning, some fairly strong bioidentical estrogen cream, bioidentical progesterone capsules at bedtime (200mg it also helps me sleep), and very strong testosterone cream which I rub into my eyelids. After doing the testosterone for several months my optician (who has been more help than ANY eye doctor I saw), pressed on my meibomian glands and was happy to report that OIL was coming out of them instead of the previous "toothpaste" he could express in previous exams. My eyes are not perfect, but it was the hormones that made my life good again. It also helped in my energy and focus and I feel happier than in previous years. So, that is my story of success....hormones....simple, boring, non-patenable, somewhat inexpensive hormones (it costs me about $100 per month or less which is CHEAP compared to all the prescriptions and doctors and supplements I went through). If you want more specifics, let me know and I will give more detail. I hope you all find some answers. I know what you are going through. You all have helped me along the way. I just wanted to post this to hopefully give something back.
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[MGD1701]

Thanks dianeidaho for sharing and we are happy for you.

1) you mentioned ''your hormones WAY below normal on Testosterone and DHEA''. Do you mean below normal FOR YOUR AGE or?

2) Did dr mention any possible risks/side effects for taking these drugs??

Thank you!