Xiidra

[pacattack81]

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!!

Just a heads up there are 4 drops possible in the vial so a 30 day supply can be extended to 60 days. It doesn't recap but you can put seran wrap over the vial and keep it straight up in a prescription pill bottle. No sense wasting two drops everyday. I find it difficult to get the 4th drop out so your mileage may vary but you definitely get at least 3.

[Rick]

Hello dear dry eye sufferers,

Well, I've been on Xiidra for almost 2 months now (almost since it's been FDA approved). Just as with Restasis, I'm disappointed. I put up with the initial burning (which does, by the way, sort of go away, or at least becomes tolerable) and the absurd goo that it leaves in the eyes until you can't stand it any longer and have to remove it. But no improvement whatsoever. After this long, you'd think you'd notice something. The goo will offer some protection against dryness I suppose, but it's not sufficient (it makes me wonder if it's the carrier, not the active ingredients that helped some of the subjects in the study). But that same goo makes for so much blurry vision, it's not worth it.

I'm staying on it for the time being, in case there's any improvement over the long term. But if you're worried about cost, you may want to wait until the jury is out. I'm lucky in that my insurance pays for it in full, otherwise, I'd stop now.

Hope at least some of you may find relief.

Rick

[treatright]

Hi all you Xiidra interested people - well it's been approximately 6 weeks on xiidra (see my previous post in September for history) and I am super disappointed I'm really no better off, and could make a good argument for being worse. Doc wanted me to try if for 8 weeks but I don't think I'll make it. My eyes are so irritated that I can only use the full strength xiidra drops at night, pain, but able to eventually fall asleep. When I put in full drop in morning, I could just save some cash and put in battery acid instead, so I cut the drop with theratears pf drop, and use it a few times during the day. My eyes are basically red and irritated but less wind sensitive, but not so much that I can travel about outside with out my Ziena brand sunglasses goggles, so not much upside. The benefit is not really outweighIng the irritation, plus I still look like I just cried and smoked pot all day, no improvement there. Occasionally I'll have a decent few hours but then I'm right back to feeling my usual awful. So discouraged about this, restasis was the devils brew for me, and this is almost as bad. It almost seems like something in the drop is working (less dry) but something in the drop is highly irritating (sodium?)
I do wonder who all the test people were that thought this was so great :/ felling bitter!
Thanks guys, I know you'll understand my frustration -

[chaka]

Hi. I am now 5 weeks in with Xiidra, and it has only gotten better since my last post. Discomfort with eye drop installation is at a minimum, and my eyes feel remarkably better. I often don't notice my eyes the entire day. For me, this has been truly life changing. I hope others will have good experiences to share.

[lizlou29]

Hi. I am now 5 weeks in with Xiidra, and it has only gotten better since my last post. Discomfort with eye drop installation is at a minimum, and my eyes feel remarkably better. I often don't notice my eyes the entire day. For me, this has been truly life changing. I hope others will have good experiences to share.

Chaka, do you know what caused your dry eye? How long have you been suffering? Aqueous deficiency and/ or MGD? Just curious as the more information people give about their eye disease the easier it may be to understand why Xiidra is helping some and not others.

[tuba25]

This is treatment day 52 of using Xiidra. About 10 days ago, the significant burning (pain level 7-8 out of 10) after instilling the drops diminished to an acceptable varying pain level between 3-5 and an acceptable duration of under 5 minutes. Unfortunately, significant light sensitivity and visual blurring continue for about an hour after instilling the medication.

Xiidra had become the treatment of choice after numerous unsuccessful treatments including a 9 month-trial of Restasis, 2 Lipiflow treatments, debriding the eyelid margins with gland expression, et. al. Consequently, I am willing to "go the duration" with this medication. After seven weeks, there had not yet been an observable reduction of symptoms, as determined by the duration between needing preservative-free lubricating eye drops. Consequently, my dry Eye doc had me start using Regener-Eyes. He had wanted me to substitute the Regener-Eyes for the lubricating eye drops. At that rate, a bottle of Regener-Eyes would have lasted me 3-4 days. That would have been prohibitively expensive. A compromise was reached.

Prior to starting the Regener-Eyes and Xiidra combination (Xiidra treatment day: 39), my average time duration between needing lubricating drips was 39 minutes. Halfway into my 4th week of using Regener-Eyes and Xiidra, that time period has increased to 2 hours and 35 minutes.

[dryeyeblues]

I am on Restasis (one year) and Xiidra (30 days). Doc said it's ok to take both. I'm afraid to stop the Restasis. The Xiidra burns ALOT and it gives me a gross chemical drainage taste in my sinuses later. It does seem like it is helping somewhat. After taking it my eyes feel a little anesthetized. I had to ask my doctor for it, he didn't know about it. The first prescription was free with insurance they are running promotions.

I've been blogging about my condition and sharing an extensive list of medications, strategies, etc. Adding some harmonica too when I can to make lemons out of lemonade.

http://www.lasikdryeyeblues.com/eye-products--gear.html

[Jgaff]

I have been on it for a week. My eyes do not feel as sore and less inflamed. I am keeping my fingers crossed and holding my breathe. What is Regener-Eyes?

[grandmamac]

I just got a script for this, and have used it twice. It burns worse than restasis (which is the reason I wanted to try it) and left me blurry eyed for a good half hour. Even tried it at bedtime, and woke up and couldn't see till I washed it out. I have had horrible dry eyes for years, and was optimistic about a new drug, finally on the market. I am depressed and disappointed and feeling very guilty because my insurance did cover this and I won't be using it.

[waterbee]

FDA Approval is being applied for. We will likely get it in the next 1-2 years in Europe. ON another note, There is a specialist dry eye center in london, i called and asked and they said they would be prescribing when it was approved, so its good to know there is somewhere to go if my usual opthamologist or nhs won't subscribed it.

[caesarmuffin]

I've Been using xiidra between 40-50 days. I do think it has helped with the eye redness I was experiencing. I have worn contacts for over 20 years and suddenly am having trouble tolerating them. I also notice my symptoms are exponentially worse when I'm at work. Could it be staring at a computer all day?

[blefleppard]

I am on Restasis (one year) and Xiidra (30 days). Doc said it's ok to take both. I'm afraid to stop the Restasis.

I have prescriptions for both too, although I was told to just "try Xiidra" with no instruction on whether to stop using Restasis. I'm also afraid to stop using Restasis because it takes so long for it to start working again (at least 6 weeks for me). If Xiidra doesn't work for me, I would be in a world of pain if I stopped using Restasis.

Since you're currently using both, I was wondering how long you wait before putting Xiidra in your eyes after putting Restasis in your eyes (or vice versa)? For example, if you use 1 drop of each twice a day, do you use Restasis in the early morning, then Xiidra at noon, then Restasis in the afternoon, and then Xiidra at night? Thanks!

[Amyfloor]

I'm done using it. Burns too much with no results after 6 weeks In fact my eyes haven't been this dry in years. My corneal doc put me on a short course of Lotemax and an upper plug which is driving me nuts because of the irritation and a constants dripping. Can't wear PROSE lenes with with steroid either. What a week.

[No tears in ATL]

I enjoyed reading everyone's experiences. Now I know what to expect. I haven't been on the boards for some time, but feel free to look me up. Background: I have upper plugs on both eyes, AD, and MGD; pretty severe end of the dry eye spectrum. I do not use drops of any sort because they are so incredibly irritating.

I am on Day 2, so take this with a grain of salt:

SIDE EFFECTS:

Drops did not sting too much upon instillation. I see how the saline/sodium-based carrier could be irritating if you are putting these in after a long day, though. WAY WAY better than Restasis (that stuff was like fire, I swear).
.
The bitter taste is especially noticeable to me, but goes away after several hours.

When I put them in 8 p.m. last night, there was a little bit of itchiness around 11 p.m. (which probably had more to do with my allergies), so I would say if you are super dry or sensitive in the evening, to put them in right before bed.

RELIEF:

Too early to tell. The real test will come when I've had an especially long day on the computer.

I wouldn't say the drops are moisturizing, though. My eyes do feel different, but in neither a good or bad way. The presence of the medication is noticeable in the eye.

PACKAGING/COST:

This one is killer. My insurance does not cover it, but the customer service reps at Xiidra are very helpful. They are going to work with my insurance plan to get it added to the formulary. Until then, their assistance program will take $250 off the monthly cost of the drug and I pay a $20 copay. Looking at the average cost of the drug alone, though (over $400), this is going to be very expensive. I need to verify that again with my pharmacy, though, just to be sure. Ugh.

Also, I'm really annoyed that there is no cap for the drops. I was worried about contamination, so I tossed the remainder, but to the poster(s) who provided the saran wrap/shot glass trick...thanks, good idea.

CONCLUSION:

I'll give it a go for a month or two unless I develop some bad irritation. I think the most noticeable results in the trial were reported after 12 weeks, with some results at 2 weeks, so I think a couple of months on this would be reasonable to try.

[No tears in ATL]

Burning and redness. Had to break out the lotemax. Please tell met this gets worse before it gets better. This is Day 4.