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Sjogrens Topics => Living With Sjogren's => Topic started by: gurs on October 28, 2016, 10:37:26 AM

Title: New prescription eye drop Xiidra
Post by: gurs on October 28, 2016, 10:37:26 AM
I just saw some ads for this new dry eye drop...wondering if anyone tried it yet, and/or how it may differ from restatis?
Guess its called Xiidra (lifitegrast opthamalic solution 5%)

Gursie
Title: Re: New prescription eye drop Xiidra
Post by: Tharrell on October 28, 2016, 03:44:13 PM
I was given Xiidra by my opthalmologist at the beginning of the month and some antibiotic eyedrops for the mgd. I must confess I have not used the xiidra religeously so I can't give you a thumbs up or down.
Xiidra was approved by the FDA in September. My doctor had just come back from a sjogren's conference, he heads the sjogren's clinic at Baylor here in Houston, and has heard many positive things from patients who were already on it. It's the only kind currently on the market. This is from the leaflet.
Mechanism of Action: Liftergast binds to the integrin lymphocyte funtion associated antigen-1, a cell surface protein found on leukolytes and blocks the interaction of LFA-1 with it's cognate ligand intercellular adhesion molecule-1 or ICAM-1. iCAM-1 may be overexpressed in corneal and conjunctival tissue in dry eyes. LFA-1/ICAM-1 interaction can contribute to the formation of an immunological synapse resulting in T-cell activation and migration to target tissues.

So in other words Xiidra is a T-Cell inhibitor.
Hope this helps?
Title: Re: New prescription eye drop Xiidra
Post by: irish on October 28, 2016, 08:55:22 PM
My eye doctor daughter in law offered this drug in place of Restasis and I refused it. She doesn't know how people are going to respond to it over the long haul. She did say that it is cheaper than Restasis right now but she feels that after a lot of people have switched to it and they have they customer base up the cost will go p also. She said that what the drug companies do with the eye drops. God Bless the drug companies. Irish
Title: Re: New prescription eye drop Xiidra
Post by: gurs on October 29, 2016, 04:34:54 AM
I went to the manufacturers website, and they offered the first month free so I guess I will try it. I cant find any pricing on the Medicare.Gov website for the prices for next year. Im still not sure what company Im going to choose.

So many dry eye commercials...I guess its a good thing. Would love it if one of them would mention Sjogrens. Ha!

thanks for the info

Gursie
Title: Re: New prescription eye drop Xiidra
Post by: Sooki on October 29, 2016, 08:21:06 AM
I've been using Xiidra for about 3 weeks now.  I'm still using Restasis too - they do different things.

First of all, Xiidra really stings for the first few days (hang-onto-the-side-of-the-sink kind of sting).  But it's relatively brief.  I was really motivated so kept on.  And it makes vision quite blurry for awhile, although not every time.  And the blurry can happen 5-10 mins later.

It does seem to be helping the moisture in my eyes. So I'm going to keep on with it for now.

It's very expensive - about $400 a month without insurance - it was $140/mo with Medicare part d.  But the dr gave me 3 weeks worth of samples and a coupon for a free month (with insurance) with discounts afterwards ("prices as low as $20 a month" with insurance) - I'll see during my next refill.  I'm not sure how long the discount will be good for, but I'm hoping for a year.  The free month was truly free.

Unlike Restasis, the vials aren't resealable.  There are only 3 drops in each vial and even if you try to save that third drop, it evaporates by the end of the day. (and it degrades in light btw) So a month is really a month.

I started Cliradex wipes at the same time (for Demodex on eyelid margins).  These also sting like crazy (Restasis is now my happy drop!).  So I can't totally ascribe the improvement to Xiidra alone, but the moisture came back after maybe 2 weeks of Xiidra.  If you decide to try it, you should see effects within 2-3 weeks, if it's going to help, based on my experience.









Title: Re: New prescription eye drop Xiidra
Post by: Way2dry on October 29, 2016, 08:47:55 AM
So glad someone started this thread.  My eye Dr. just told me about Xiidra and gave me a coupon for 1 month free if I wanted to try it.  He has just started using it with his dry eye patients and said it was too soon yet for him to tell how well it's working.  He said it takes several weeks for it to work.  He is also keeping his patients on Restasis at the same time.  I think I'll wait a little bit before I try it.  Hope to hear from more here that it works for them.


Title: Re: New prescription eye drop Xiidra
Post by: keelton on October 29, 2016, 01:08:44 PM
If you continue to take restasis how often do you take each one ?
Title: Re: New prescription eye drop Xiidra
Post by: Sooki on October 29, 2016, 01:33:22 PM
I still take Restasis twice a day and Xiidra twice a day.  But not at the same time.
Title: Re: New prescription eye drop Xiidra
Post by: Tharrell on October 29, 2016, 09:16:29 PM
I guess I'll be good and just grit my teeth if the stinging only lasts a couple of days. For me Xiidra is cheaper. With BCBS of Texas I paid $50 for restasis and I pay $30 for Xiidra. I'm not using restasis, but I am using antibiotic eye drops for the meiobian gland dysfunction. I already have improvement in tear production thanks to orencia injections.
Title: Re: New prescription eye drop Xiidra
Post by: gurs on October 30, 2016, 04:43:24 AM
The drier the eye, the more burning you will get it seems. I had a hard time with restatis and had to stop. Since this is free for 1st month, will give it a try.

Gursie
Title: Re: New prescription eye drop Xiidra
Post by: Tharrell on October 30, 2016, 04:10:13 PM
My doctor said that's why most patients give up on restasis, the burning, I could never get it to stop despite refrigerating it. He said Xiidra doesn't burn like that. We'll see.
Title: Re: New prescription eye drop Xiidra
Post by: Kadiddle on October 30, 2016, 04:18:45 PM
I just finished my first month of Xiidra and my corneal ulcer and erosions are healed finally! Unfortunately, that was a free first month. My insurance will not cover it and for me is would be almost $700 a month. So...I will have to try Restasis which I tried several years ago. They stung and made my eyes goopy. So...I'll try it again. If no change, then I can petition the insurance company to pay. We'll see what happens. But I was VERY HAPPY with Xiidra.
Title: Re: New prescription eye drop Xiidra
Post by: Sooki on October 30, 2016, 06:31:48 PM
Kadiddle - You weren't able to get the discount mentioned on the Xiidra website for months 2-12??  I hope mine comes through next month.  The Walmart pharmacy said it was $400 without insurance and were optimistic about the subsequent discounts - might a different pharmacy be better?  Maybe email the company and see if there's something they can help with - I know they're really promoting it big time this year.
Title: Re: New prescription eye drop Xiidra
Post by: Kadiddle on October 30, 2016, 07:56:06 PM
Sooki, I will check it out again. I am so scatter-brained I missed that part. I'll check out the website and see what I can do. I would LOVE to stay on the Xiidra. It has made a huge difference.

Title: Re: New prescription eye drop Xiidra
Post by: gurs on November 03, 2016, 04:01:21 AM
I called my current script company and they wont cover..said it would be $400.00 for month supply. I also contacted a few others I can choose from for 2017 if i want to change, they wont cover as well? what the heck.

Im going to get my free month supply today. This is crazy..

Gursie
Title: Re: New prescription eye drop Xiidra
Post by: morganjen on November 03, 2016, 05:30:32 AM
I have been on it for 4 weeks and am stopping. I am getting a lot of photophobia. Much worse in the last 1 1/2 weeks. I never had a problem with the bad taste. It went away on week 2. I didn't feel I got any lasting help from Xiidra. Insurance refused to pay for Restasis and said I had to use cheaper alternative.
Title: Re: New prescription eye drop Xiidra
Post by: Tharrell on November 03, 2016, 06:00:01 AM
My doctor did warn me that Xiidra is still so fresh on the market that most insurance companies don't cover it yet. Mine thankfully did!
Title: Re: New prescription eye drop Xiidra
Post by: SjoGirl on November 03, 2016, 02:15:55 PM
I have been wondering about this, thanks for posting the questions and all of the helpful responses.
Title: Re: New prescription eye drop Xiidra
Post by: Kadiddle on November 03, 2016, 09:29:53 PM
Gurs,

Go online to the Xiidra site. They will give you a coupon and your first month will be free. I was told the prescription would cost me over $300, but after the first month free, I only paid $45. That's all it will cost me for 11 months. Maybe by then, my insurance will cover it.

Title: Re: New prescription eye drop Xiidra
Post by: markpharmd on November 08, 2016, 07:28:28 AM
I've just seen all this talk about side effects & cost of Xiidra & Restasis. I am not sure if any of you have heard of or tried amniotic fluid eye drops. I am a pharmacist, and I have connections with a company that produces them. A lot of resistant dry eye sufferers have had great things to say about them as far as relief they provide and no stinging side effects and simply an eye drop. Only thing is it does NOT require a prescription, so insurance doesn't pay for them. As you can imagine the cost to collect, sterilize, and package human amniotic fluid is significant; so it's $175-$195 for a month's supply. I have been able to hook people up with a free sample because of my connection,but I don't want to abuse that privilege so private message me if you want more info or want to see about getting a sample.
Title: Re: New prescription eye drop Xiidra
Post by: Wal on November 13, 2016, 01:50:54 AM
I'm about to start Xiidra. Is it supposed to help with MGD also?
Title: Re: New prescription eye drop Xiidra
Post by: Tharrell on November 13, 2016, 06:23:32 AM
I don't know about that Wal. My doctor prescribed me longterm antibiotic eye drops. I have to put a drop in each eye and massage the overflow into my meobian glands. It seems to be helping.
Title: Re: New prescription eye drop Xiidra
Post by: eye2dry on December 15, 2016, 02:34:13 PM


hello to all.

Saw my eye dr today and he gave me a RX for Xiidra and info for my pharmacy
to get me a months worth free. My dr said if it works for me I could notice a
change as early as 2 weeks...unlike Restasis which takes many months.

Who uses this and does it help you? I have tried Restasis in past and it never
worked for me.

To Tharrell......what is the antibiotic eye drop you use daily?

I have an RX for steroid eye drops but do not use it much b/c my eye dr
warned me not to use it but only as a last resort when my eyes are miserable.

thanks, shelly
Title: Re: New prescription eye drop Xiidra
Post by: Wal on December 15, 2016, 03:02:12 PM
I'm using Xiidra. My first month was free. About to get my second month. I started it with Prednisone eye drops so I'm not sure which is working. I've got one day left on the steroid drop. I did have a follow up appt last week with my eye doc who said my TBT had improved from a 3-4 to 6-7. My comfort level has been up and down since using all the drops but I have had an excellent day for the past 3 days in a row so that's good. I'll keep everyone  updated. It doesn't help everyone in 2 weeks but sometimes takes longer...what my eye doc said.
Title: Re: New prescription eye drop Xiidra
Post by: Tharrell on December 15, 2016, 03:27:05 PM
Shelly, I'm using azithromycin, azasite, 1% opthalmic solution once a day in each eye. I am to put a drop in my eye then rub it into my meiobian glands. It's been helping, a lot less flaking and crud in my eye.
Hope it helps!
Title: Re: New prescription eye drop Xiidra
Post by: Sooki on December 16, 2016, 09:09:37 AM
Wal - Don't forget to go onto the Xiidra website and get the discount coupon for the first whole year.  It applies if you have insurance but it doesn't cover it or something like that.
Title: Re: New prescription eye drop Xiidra
Post by: Sweetcheex76 on December 17, 2016, 09:10:25 AM
When I was at my eye doctor appointment this week, I asked about Xiidra. I score 0 on the Schirmers test in both eyes. The dryness has gotten brutal and I've been on Restasis over 2 years and honestly, it does nothing to increase the tears. So, the doctor gave me a 20 day supply of Xiidra. He said he's only given out a few samples but no one has reported back about if it worked or not. Yesterday, I started using it. Last night when I was using the second dose, I realized my use of OTC eye drops was way down. I usually use them several times an hour. When I woke up this morning, my lids weren't stuck to my eyes. I used the Xiidra about 2 hours ago and haven't used any drops since. It's windy today with low humidity and we have the furnace on which usually means I'm putting drops in my eyes constantly.

I've read that Xiidra can take 2 weeks to work but I swear there's an improvement already. I'll keep my fingers crossed as I finish the samples. I've been pretty down lately as my Sjogren's symptoms have gotten so bad and was diagnosed with Fibromyalgia and TMJ in the last week. It's nice to have a positive thing happen.
Title: Re: New prescription eye drop Xiidra
Post by: Sooki on December 17, 2016, 05:16:26 PM
Sweetcheex - So glad it worked for you!  Keep us posted.
Title: Re: New prescription eye drop Xiidra
Post by: Kadiddle on December 26, 2016, 09:47:56 AM
Gurs- I hope you got your free prescription.  And every month for a year after that, you'll get a discount. It cost me about $40 a month. Hopefully, in a year, the insurance companies will cover it.
Title: Re: New prescription eye drop Xiidra
Post by: Wal on December 26, 2016, 12:34:15 PM
I started Xiidra with a steroid drop about 5-6 weeks ago. My eyes have been better. Still dry but not as bad and I'm not using drops as much. Perhaps the steroid drops helped th most, but I've been off of them for a week and still using the Xiidra. So far I haven't experienced any major rebound. My TBT had improved at my last visits 2 weeks ago. So, I'm going to say Xiidra has had a positive impact.
Title: Re: New prescription eye drop Xiidra
Post by: irish on December 26, 2016, 10:12:24 PM
My optometrist daughter in law thanks you for this thread. She has prescribed this eye drop to some of her patients but has not always heard back from them. I read a lot of these posts while she was cleaning up the kitchen and she was so happy to get the input as it helps her with answering questions with patients. Takes time for her to learn a lot of the side effects and effects of the new drops. Thanks you all. The people on this site always come through. Irish
Title: Re: New prescription eye drop Xiidra
Post by: gurs on December 28, 2016, 03:53:34 AM
I just saw my eye doc a few days ago. I keep breaking blood vessels in my eye, likely from extreme dryness and sinus issues.
I have been using genteal drops for years, but I swear they changed something in their formula. I contacted manufacturer and they said they changed packaging, but formula the same...I don't think so. He gave me sample of Systane complete, and I think they were better.

He also said some patients have reports good results with the Xiidra. Im going to give them a try. Im afraid I will like them, and then have to figure out how to pay for them!! HA HA!!

I would also use caution in those of you on long term steroid or antibiotic drops for the eye, as the side effects can occur
down the road. My eyes always felt better when I had a steroid drop, but docs said NO WAY.

Gursie
Title: Re: New prescription eye drop Xiidra
Post by: cccourt1942 on December 28, 2016, 07:08:23 AM
GURS:  re: your last post on "breaking blood vessels"
        I looked at your regimen under your name....is this correct?  You aren't on Restasis or Xiidra?  Nor are you taking Omega 3?  I ask that as the "blood vessel" thing was one of my early "conditions"....long before I knew it was a symptom of anything.  The last few years (prior to SjS dx) the "red" in my eyes would erupt a couple of times a year to what appeared that my eyes were bleeding.  The ophthalmologist would dx it as "allergic conjunctivitis" and I would be treated with steroid drops.  The drops worked...but that bloodshot eye look would remain...ever present.  AFTER SjS dx, a NEW ophthal (didn't go back to 1st one) told me to get Omega 3.  Within a couple of months my eyes improved.  This was BEFORE Restasis was Rxed.  When I say improved, I mean friends commented on my eyes looking "brighter".  In fact, I had already seen it...but hadn't realized how dramatic it was until various people commented.  I have moved since my initial dx.  The ophthal's office where I go now "sells" (actually provides brochures for info--yet recommends the product) a super (and super expensive) Omega 3.  I passed on it due to the cost----plus the fact the redness had decreased a lot.
      Have a good day..and Happy New Year!  :)
ccc
Title: Re: New prescription eye drop Xiidra
Post by: gurs on December 28, 2016, 01:12:41 PM
Ive been taking omega 3's for years. I cant fit every supplement on my bio (ha ha) ..would take up a page. I have to talk to my rheumy about this in few weeks. My eye doc said maybe something vascular related, probably need an MRI or something. Also, I have excessive bruising and thin skin all over from my steroid use, thus causing my blood vessels to leak easy. My sinus/allergies seem to be playing a huge part in all this. Hopefully, will get some answers soon.

Thanks for the info!

Gursie
Title: Re: New prescription eye drop Xiidra
Post by: bettyp on January 22, 2017, 04:56:38 PM
I use Restasis and then 15-20 minutes later the Xiidra. It still stings after several months, but it works and I'll continue with both. The short period of stinging is worth not having my eyelids stuck to my eyeballs every morning.
Title: Re: New prescription eye drop Xiidra
Post by: eye2dry on January 23, 2017, 08:59:01 AM
hello to all.

I have been using my free Xiidra samples one month now. It is helping a lot.

I use way less eye drops during the day and do not get up at night anymore to

put drops in. My eyes look "whiter" now. Yes, it stings for a second when putting in

and yes, it makes your vision blurry for approx. 10 minutes but then you get relief!!

It's a watery drop but to me it feels like it is making a protective oily protective

covering over my eye.



It costs me $120.00 for 3 months supply....the mail order pharmacy said
without my insurance it would cost me $1100.00 for 3 months.


shelly
Title: Re: New prescription eye drop Xiidra
Post by: cccourt1942 on January 23, 2017, 09:29:15 AM
BettyP: Did your ophthalmologist advise/prescribe using both drops...simultaneously?
Thx,
c3
Title: Re: New prescription eye drop Xiidra
Post by: SunshineDaydream on January 23, 2017, 05:36:05 PM
cccourt, when I found Restasis to be helpful but insufficient, my ophthalmologist recommended taking both Restasis and Xildra twice a day each and waiting about 15 minutes between application of the two types of drops.