Xiidra

[Amyfloor]

Anybody using it yet? If so, how's it working for you?

[grandsporta]

I am very very surprised not one person has replied to this nor has replied to my post I made in the other forum about Xiidra given Xiidra is only one of two drugs that is FDA approved that will help relieve what we are all here for. Why aren't people more excited about this as I am? I have a doctors appt next week and can't wait to try this out. This stuff is suppose to help signs and symptoms of dry eye and be less painful than Restasis.

[bunnyrabbit123]

It's confusing, as some people say they have had prescriptions filled for this, yet I've talked to Shire (company that makes xiidra) and they say widespread availability won't be till around Aug. 29th. Beyond that, right now my medicare drug plan is telling me they won't pay for this-my cost would be around 450.00 a mo. and the more common side effects are problems I already have, blurred vision, eye irritation etc. Id love to be excited about this but I can't pay for this. Also, those on facebook who are claiming results after 3 days of use strike me as the kind of shills I've run across when lipiflow, ipl arrived on scene-just my opinion. I hope it works better for a lot of you who like me, used restasis and found it useless.

[grant555]

seems unlikely that many ppl can get this yet. also, it failed clinical trials initially so it certainly isnt going to be a magic bullet.

[epicjinx]

Well, I cant get access to it (I'm in the uk), and wouldn't help me as I have mgd not a water layer problem, how much is it? ( if its 450 that's just damn greedy we are already dealing with this, and don't need that). Also, I think it would be similar to restasis... why aren't they putting prices at reasonable pricing? If its cheaper, it would sell better... the higher the less people can afford it.

[Amyfloor]

I am very fortunate that my mail order prescription plan carries this product so I was able to purchase it at a reasonable cost. It is way too early to tell if it has made a difference as I have only been using if for about 10 days.

[episodicdryeye]

Hi Guys,
Like Amyfloor, I have been on Xiidra for a very short amount of time.

BACKGROUND
I am a 27 year old female and have had bouts (7-8 month) of dry eye throughout my life (interspersed with years where I will be totally without symptom, prancing about in my contact lenses). I think this most recent episode has been the result of a new job which has been especially computer intensive. Coupled with long drives and the aircon blasting in my face, I have felt like hell for the past 5 months.

Though it is too soon to conlcude on Xiidra obviously, I will share some of my initial thoughts:

QUANTITY
Xiidra comes with 60 vials per box (one month supply, but trying to stretch it a bit more than that).
The vials have VERY little liquid in them, when compared to Restasis. Maybe half or less of a typical Restasis vial. You are supposed to use one vial for one application, but that is far too costly for me - so I store mine in the fridge in an airtight bottle, so that I can get at least 2 applications out of it.

This is exactly what many of us have been doing with Restasis, but you will find it much harder to do. Firstly, the vials don't close back on - so you need to keep them upright in a shot glass or something. Secondly, the low volume of liquid per vial means you will have to be very sparing per application, if you want 2 applications out of each vial.

SIDE EFFECTS
The liquid definitely slips back into your throat a bit and you get a bitter taste for a split second. It's really not even worth mention though. I remember finding milk quite bitter my first day on Xiidra. Don't really have much of the dysgeusia.

As for the eyes - there is definitely a bit of irritation when instilling the drops. I have never been one to mind this though, not even with Restasis. I almost psychologically feel as though things are working when they "hurt".

What I will say is that unlike Restasis which leaves a bit of a burning sensation all day, Xiidra's sensation is one of short-term itching - I feel like I want to scratch my eyes for about a minute, but this quickly goes away.

Unlike Restasis, the drops are lubricating. They kind of well up in your eyes for hours - which can be annoying as it compromises vision, but also so relieving. This to me is the STANDOUT difference between Restasis and Xiidra. It addresses symptoms as well as the underlying root cause (a vicious cycle of inflammation in the eye).

IS IT WORKING?
I have definitely had more good days since starting the drug. I was advised NOT to stop my Restasis routine (which wasn't really working anyway). So I am actually taking both at the same time.
Any improvements I see however are directly attributable to Xiidra.

If I am to compare the immediate upside of Xiidra to anything else I have taken for this horrid condition, I would liken it to my first week on steroid eye drops (FML). I felt instant relief. But this relief quickly disappeared when I was on the screen too much or pushed my eyes a little too hard. This is exactly how I feel on Xiidra.

I am on Day 12 , and the benefits are supposed to have kicked in by Day 14. I can't say that I am fixed yet - contact lenses are still out of the question and I have moments in the day that are still bone dry. But when I tear, I tear, and it's glorious, and this wasn't the case before Xiidra.

So I will be patient with this.

My 1 month's supply (which I will stretch to 7 weeks with my sparing applications) was given to me by my ophthalmologist (who I travelled to the US to see) - he said it isn't out on market yet. I don't live in the States so will need to have new supply fed-exed over by a relative as soon as one of you Americans out there confirms that it's commercially available!

If anyone has any questions, shoot them my way! Will keep you guys posted on how the rest of the month goes.

[lizlou29]

Hi episodicdryeye, who prescribed you the medication? If you are not American how much did you pay for 1 month's supply?

[Klee]

I think too early for tesults,lets face it,Eye docs probably dont have a clue!

[Amyfloor]

I agree, it's way to early to report results.
I will say that I do not get that lubricating effect for hours like episodicdryeye speaks about. I certainly wish I did!! They do burn upon installation but it is getting better. Also,I don't understand how to store the small remainder of the liquid in the refrigerator? Do you put it in a shot glass with another one turned upside down? Thanks!
I will keep you posted.

[Klee]

Why would a person have to take restasis if they start this..cant imagine what 2 would cost a month.

[Amyfloor]

My corneal doctor has me on the same regiment--Xiidra 2x a day and I am continuing with Restates 4x a day.

[episodicdryeye]

Yes I agree it is too soon to conclude - however I was told effects should kick in by week two (which I hit today). I definitely feel more tearing, but any positive effect of the drug is quickly obliterated by the slightest computer strain/driving. Which is unfortunately 100% the nature of my job.

Amyfloor - for keeping it upright, I put my open vial in a shot glass and then into a closed jar so that it doesn't evaporate.

Klee - I think the rationale behind maintaining the Restasis is to have a clear process of elimination i.e. "All else stayed equal, Xiidra was added, improvements were had, therefore it must be the Xiidra".

I doubt it would be a long term solution.

[pattyleo]

Hi Guys, for some reason Restasis is not available here in Australia and Xiidra will unlikely be available here any time soon also. Can i ask does the Restasis/ Xiidra come in a box of 30 vials which is supposedly a 30 day/ one month supply? Also, how much does each cost and is it covered by insurance? Thanks

[BMR777]

Hi Guys, for some reason Restasis is not available here in Australia and Xiidra will unlikely be available here any time soon also. Can i ask does the Restasis/ Xiidra come in a box of 30 vials which is supposedly a 30 day/ one month supply? Also, how much does each cost and is it covered by insurance? Thanks

Both Restasis and Xiidra come in individual vials for at least a one month supply. I know Restasis you can get a 90 day supply, but for Xiidra I just got it yesterday and it was only a 30 day supply that came in a big box. The Xiidra vials come in pre-wrapped packs of 5 vials each, for a total of 60 vials or a one month supply.

Both Xiidra and Restasis will cost the same for a 30 day supply. According to GoodRx you can get Xiidra for between $430 and $445 US without insurance. With insurance my Xiidra prescription was just a $30 co-pay, but this may differ for you depending on your insurance company and plan deductibles.