Hi all,
I'm wondering about everyone's experience with Restasis? My ophthalmologist prescribed it, and first off, it will cost me $355! Secondly, I was reading on their website about how it may cause lymphoma?! Having Sjogren's alone leaves us at a higher risk for lymphoma, so I'm wondering if this is very rare? I wear contacts during the day with no problems, but my eyes are very dry when I wake up in the morning. I use the Genteal gel for that and it works very well for me. I'm hesitant and scared to start it.. :-\ Help.. :'(
Thanks in advance!
Sticker shock is a biggie.....that supply should last you several months. I have never worn contacts, but after reading thru this forum for several years, most give it up or say they were advised against contacts. They all mourn the loss. But if your ophthal is giving them to you, i'd say it would be physically okay.
As to the restasis, there are trade offs for all the drugs I take personally. It's one of the reasons our various doctors see us frequently. they are constantly checking for any bad effect of various drugs. My ophthal just put me on a 6 month follow up instead of 3 months as I've been on the restasis long enough for him to check me and feels comfortable placing me on that schedule.
You didn't ask this question specifically, but I will say this: I didn't "feel" noticeable difference in my eyes until over a year. I mean, there are gradual improvements....but still aggravations. At one year the ophthal announced my eyes looked all together different than from the first time he saw them. So I always say you may not "feel" the difference, but the doctor can SEE the difference.
The decision is yours. I would think the amount of damage done to your eyes from SjS would help you decide. For me, personally, I have zero tears. Have not shed a tear in well over 20 years. That's dry.
Sjoldier c3
You make a good point.. I am worried about future damage to my eyes, so I guess you just have to deal with the possible risks. My ophthalmologist wants me to come back in 3 mos, then 6 mos after that, then yearly.
Thanks for your advice :)
What kind of damage can Restasis cause the eyes?
I was talking about damage from sjogren's, not restasis. Sorry :-[
"I'm wondering about everyone's experience with Restasis?"
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I have used Restasis eye drops since 2011. It was prescribed because I was having burning, a feeling of sand in my eyes, grittiness, etc. No OTC drops helped at all except for perhaps 2 minutes. Restasis drops took only 2-3 weeks to work well. I have no problems with my eyes now unless I forget to instill the Restasis drops. Restasis has been a miracle drug for me.
Restasis is Cyclosporine, which is an immunosuppressant agent. Restasis actually suppresses the inflammation in the eyes and can improve the function in the various parts of the eye as well as decrease and prevent the damage caused by inflammation. In some people it can improve the tear production.
Left untreated, the dry eyes from Sjogren's can cause severe damage to the eyes and even blindness via corneal abrasions, corneal ulcers, corneal melt, or warped corneas. Damage from untreated dry eyes is not rare. I have 3 Sjogren's friends with damage, one with corneal melt, one with corneal ulcers, and one with warped corneas.
" it will cost me $355!"
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Have you checked out the Restasis financial assistance on their website. Eligible patients may pay as little as $0.
Unfortunately, for some strange reason, those of us on Medicare and some other government insurance plans are not eligible, but please check it out to see if you are eligible.
https://www.restasis.com/Savings-and-Support/Get-Savings
"I was reading on their website about how it may cause lymphoma?!"
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I do not see on the Restais website where Restasis eye drops will cause lymphoma. Very little cyclosporin is systemically absorbed via eye drops. It is more of a local immunosuppressant. Oral or intravenous Cyclosporine, given in high doses to people who have transplants, RA, Psoriasis, etc. are the people who may be more susceptible to increased lymphoma risk for Cyclosporin. But, keep in mind, these people are receiving high dose systemic cyclosporin which suppresses the entire immune system. I would not be concerned about increased risk for lymphoma from Restasis eye drops.
I hope this helps. Best of wishes going forward.
Thank you, this is very helpful. I read about it in the product information, and all I could think, is great.. one more thing to worry about..
I will definitely check out the financial assistance. I almost passed out when I saw the price..
Thanks again
About the price...The directions are to use a new vial with each dose as the drops do not contain a preservative. My optometrist advised me that if I was careful and did not allow the tip to touch anything, I could cap it, refrigerate it and use the same vial twice a day. I have actually been careful and getting as many doses as possible out of each vial. That averages about 3 or 4 (depending on how good I am at aiming the drops into my eye). That means that the actual cost for me is 1/3 of the listed price. Not cheap, but better.
Katie
Thanks!! I will definitely do that then! That will save a lot of $.
I know that this is a late reply. I just joined and thought you might benefit from my experience.
My pay out is even worse than yours. Even with the company's "discount" I still have to pay $405 for a 30-day supply. I have purchased 2 months worth and it lasted me 6 months using all the med in the vials.
Unfortunately for me, after 6 months, I have received zero improvements. And once the last few vials are gone, I'm not wasting my money further. I hope that you experience the success/relief with it that I have not found. It really does work for some people. My eyes are bone-dry all night. All that keeps me from terrible erosions and ulcers is using 3 products multiple times a night. I have to constantly reapply, so it's like getting up with a newborn. Better than excruciatingly ouchie eyes and vision loss due to scarring. So I'll take what I can get.
Best wishes to you! :)
P.S. Oh, and here is a tip. Use a shot glass or other short narrow cup, to set the vial in. It will keep it upright so there will be no spilling. I keep one by my bed to keep my single-use lubricating drops upright as well so there is no wasting.
Yes me too! I'm on week 2 and so far, my eyes burn constantly and I still have to get up 2-3x a night to apply gel. Why is it so much worse at night? I sleep with a humidifier and they're still bad. I'm hoping my Restasis investment will pay off soon or I may be donating my expensive supply to someone on here. Lol. I did do as Jasper recommended and checked the website. That did save me $90. Thank you, Jasper!
My first SS symptom was dry eye, and I started Restasis before I had any idea what SS even was. It allowed me to wear contacts for a little while longer. Even today, I don't need to use eye drops as long as I use Restasis regularly. Luckily, my Restasis is covered by my health insurance, and it's certainly worth the copay cost to me. I also get two doses from each vial, which doubles the amount I get from each package.
As has been pointed out, Restasis is generally more effective the earlier you start using it. If you can still wear contacts, you are in a great position to slow the progression of dry eye with Restasis. The cancer risk is very theoretical; while Cyclosporine does raise the risk of cancer when taken systematically, the amounts in Restasis are much, much smaller and are only taken topically. I have yet to find a study that actually found an increased risk for Restasis. I wouldn't let it stop you.
Thank you, WhatYouSjo. That gives me more hope. I HATE wearing glasses, so I'd like to hang on to my contacts as long as I can. My eyes are bad at night and when I wake up, but don't bother me as much during the day. Your website is also very helpful. I too do AIP (just started diet about a month ago) and my gastrointestinal symptoms have completely gone away. I'm going to try the Ubiquinol you mention. Thanks again.
Restasis is cyclosporine which is an immune suppressant. Typically immune suppressants can cause lymphoma on occasion. This is not real common development and the dosage in the Restasis drops is much less than the amount of drug a person would take my mouth. When we get ill with autoimmune diseases we read everything and drive ourselves crazy. It is part of being chronically ill.
I have been on REstasis since 2004 or so and it has kept my eyes from being very bad. The one thing that most eye doctors don't so is have a person use prednisone eye drops for a week or two prior to starting the restasis. The prednisone helps to decrease the inflammation in the eyes so that when the restasis is started the burning isn't as bad.
Also, keeping the Restasis in the refrig helps decrease the burning. Place the Restasis container in a plastic container that allows it to stand up without spilling and keep it covered to prevent contamination of the drops. If the drops get bacteria in them our eyes can get an infection.
Also, about 15 minutes afterl. using the REstasis you can use some type of artificial tears to help decrease the burning. The burning is because your eyes are dry and you may find that if you quit your drops for a coupleof weeks your eyes will start to become more dry. Just some info for thought.
Also, don't panic about the lymphoma that is possible. It is very small percentage that develop this and life is too short to worry all the time. Worrying is stressful and that makes autoimmune worse. Also, lymphoma is quite treatable these days. We are Sjoggies and we are tough and we seem to manage to get on with life and with our issues as they come up. Good luck. irish
I have a question about Restasis and I hope someone can answer this. The info given in the tv commercial says that if you have plugs Restasis will not improve tear production.
Anyone have a doc who has addressed this issue? I have the plugs and I really can't notice much of a difference. Any thoughts? Thanks!
Tinker:
I have plugs and use Restasis. In my case the plugs helped to retain the moisture in my eyes rather than exiting through the tear duct. The Restasis has taken a while to work but is reducing the inflammation. My eyes have significantly improved using both.
Debby