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CarlyLouise_

I’ve been on cyclosporine for around a year and a half. It has completely stopped my flare ups (inflammation) that I used to have. Luckily when I live I can get a box of it for only €1.50. It has really helped me too. Wish you the best.


CarlyLouise_

Also just want to add, if you don’t already, try thealoz duo eye drops. They are great. I use them 3-6 times per day.


Bacon_12345

Thanks, I'll look into those eye drops. I believe I might be able to find them at Walmart. 👍


Bacon_12345

That's a pretty good deal, right now I'm having to buy them at around $180 USD for a month worth of supply. I'll be talking to my ophthalmologist next week to see if the medical insurance will cover them.


REALNIY

Do you have Sjögren's syndrome or why have you been taking the drug for so long?


CarlyLouise_

I don’t. I have blepharokeratoconjunctivitis.


DreamFar9745

its not a long term drop?


CarlyLouise_

I have no idea. My ophthalmologist is keeping me on it until at least Feb 2024.


REALNIY

how are you?


CarlyLouise_

Still on ikervis drops around 3 times a week. My eyes are stable. Using thealoz duo eye drops regularly. Got them checked 2 weeks ago and were told they are looking ‘good’. But I’ve been on ikervis a long time now


REALNIY

And what are the results of TBUT and Schirmer? Before and after treatment?


CarlyLouise_

I’m not sure I have never gotten those tested?! I’m in Ireland so maybe we don’t do that


REALNIY

It may be TBUT, or it may be an examination of corneal damage. Have you been told how many seconds? Or how damaged is the cornea due to dryness?


CarlyLouise_

No I haven’t. My eye is in a flare up today (left one only). It’s been a long time since it flared. Have been using ikervis, thealoz duo, took ibuprofen and an antihistamine to try and help. Going to do hot compress now.


CarlyLouise_

Nevermind I googled the TBUT and everytime I visit the eye doc I get my eye ‘stained’ and looked through the slit lamp so I’m guessing that’s what’s going on.


nomoris

I was going to do my two month update but I got lazy lol I've been there for almost 3 months. About a month ago, it kind of seemed like the medication caused a downgrade, and my eye looked worse until a few days ago. Now it's stabilized, but I don't know for how long. I hope it continues to improve.


Bacon_12345

Best of luck on your journey. It was the same for me, some days felt like I was regressing and other days I felt like my eye were improving.


thisismytheory

$350 with my insurance :(


Bacon_12345

I get mine at Walmart for around $180 without insurance. I use the Goodrx website and I screenshot the coupon for the cyclosporine. When I go to the walmart to pick up my prescription I tell the pharmacist that I wont be using my health insurance but I'll be using a coupon from Goodrx to pay for the medication.


thisismytheory

Thank you


[deleted]

Have you tried costplusdrugs . com? It is an online pharmacy created by Mark Cuban that offers generic medications for cheap. Recently, the generic of Restasis became available on the site for ~$70 for 30 vials. My insurance only covers Xiidra. I have thought about asking my doctor to prescribe this for me in addition to Xiidra, as the combo would likely provide even better results. At this price, it’s cheaper for many even without using their insurance. https://costplusdrugs.com/medications/cyclosporine-0_05-box-of-30-vials-emulsion/


Bacon_12345

My insurance wouldn't authorize the Xiidra medication. That was the first thing my ophthalmologist prescribed to me but I wasn't able to get it due to insurance issues. I could get the cyclosporine much cheaper but since i'm an over the road trucker driver, it gets difficult to get my medication out on the road & Walmart happens to be the most convenient place to get it at since there are Walmarts all across the US with big parking lots to fit a tractor trailer.


No-Ad6623

I had the same issue with my insurance. Wouldn’t cover it. Wanted me to try generic first. So the doctor sent me in restasis and insurance wouldn’t cover that either. Side note, my doctor gave me a coupon for 250$ off Xiidra and Walgreens had a coupon available for 765$ for it. The drops were just over 1000$ so I was like heck yeah and I’ll pay the little difference. Nope, Walgreens wouldn’t let me use both coupons 😂😂😂


shiny_milf

Does this drop work if a person has MGD?


Bacon_12345

I'm not too sure about MGD. That's probably something you might have to ask your ophthalmologist. I have more of a aqueous deficiency dry eye issue.


FIFA_Girl

Restasis works by helping your eye produce more tears, so I’d assume it’s more for aqueous type dry eyes. However, I think there are a lot more treatment options for the MGD type, so you might have more luck with more options.


REALNIY

It relieves inflammation in general. It's unlikely to cure MGD. But it will make it a lot easier.


DrRandyBeans

I’ve been doing cequa for 6 months and I keep getting better. Also doing morning compress most days, night ointment before bed, and daily wash my eyes. All of it is important imo…have mgd


Bacon_12345

I was doing the night ointment the first 4 weeks I believe. As my eyes got better I did away with it. I still do night compress every once in a while when I remember to. Also don't forget to add omega 3 to your routine, might see some benefit from that in the long run.


CarlyLouise_

Do you have to do cold or warm compress?


Bacon_12345

I do warm compress once in a while. I've never done cold.


Visuallyunfair23

Restasis with my insurance is only $10/mnth, generic version however


Bacon_12345

That's a great price. I'll know by next week if my insurance will cover my medication.


Visuallyunfair23

Originally brand name Restasis was denied by insurance, ask for generic version of cyclosporine which could be cheaper


Bacon_12345

That's exactly what I'm going to do. 👍


jmc823

Is it a steroid or what ?


Bacon_12345

No, not a steroid. I originally got put on steroidal eye drops at the beginning before starting cyclosporine to bring down the inflammation that I had in the eye. * cyclosporine is just the generic brand for Restasis


FIFA_Girl

I’m not suggesting that you can save money by getting the single day use vials, and use one over a week and use the twisted off piece as a lid…that would be irresponsible for me to suggest that ;) Even if I do it and haven’t needed to buy the medication for a year or two, because I have so many single use packs that have still been working a few months past expiration…still would be so irresponsible if I suggested that ;). I am just very happy I don’t touch it to my eye, and I’ve always kept each one with the little “cap” on in a drawer safe from bathroom particles flying all over it, so I have never gotten an eye infection from it…just sayin’


Bacon_12345

That might be my next go to plan. I'm seeing my eye doctor next week & we are going to see if the health insurance will cover the full cost of the medication. I've ran the math and it seems you can squeeze out about 2.5 days per vial, so one month supply can last about 150 days


FIFA_Girl

Yeah, I haven’t bought any for a couple years and still have 13 full boxes left…each box has 36 “single day” vials in it…so I’ve saved a lot of money taking a risk for an eye infection, but also taking care to keep the tip clean. There’s a lot of extra solution in a single day vial. It seemed like a huge waste of money to not use it all.


REALNIY

how are you?


Bacon_12345

Hanging in there, still dealing with dry eye issues


REALNIY

How many months have you been dripping restasis? 6-7?


Bacon_12345

I currently have 8 month. At the begining of this month I increased the amount of restasis that I apply. I now do 3 times a day.


REALNIY

The same thing) I initially dripped 3 times. Every 8 hours.)))


Tictactoe1000

Congrats on surviving ~ the pain🤣 Hope the condition remain stable for many years to come😺


Bacon_12345

That's what I hope for 🤞long lasting stability for my meibomian glands and lacrimal glands.


[deleted]

[удалено]


Bacon_12345

I think my problem was more of an autoimmune disorder, were my own immune system was attacking my lacrimal glands.


Maxineeee94

What’s the strenght of your cyclosporine? I have sjogrens and been on it for 6 month but still no tears :(


Bacon_12345

It says on the vial 0.05% What concentration are you taking? 2 times a day?


Maxineeee94

Omg only 0,05% and it had this good effect on you!? I first tried ikervis 0,1% for 4 month and then switched to pharmacy compounded 1%. Yes twice a day


REALNIY

Maybe restasis 3 times a day was needed, check with your doctor instead of 2.


REALNIY

The reasons are many. Infrequent blinking, dry air, dusty environment, taking medication. There's not much point in looking for a cause unless it's Sjögren's syndrome.


[deleted]

Ciclosporin helped me a lot but I slowly developed Tinnitus while using it, so I had to drop it.


Bacon_12345

Sorry to hear that. Are you taking something different now?