Hi all! I live in Canada so after going thru a special program to get access to Restasis I finally found out I am getting a 3-month supply of Restasis after a 2 month wait tomorrow. I honestly don't think my opthamologist has ever given it to anyone before and I've heard it sometimes takes 3 months before it takes effect. I need help from you experts in the field!
1. Should I go on prednisone drops for a few days first - I've heard this may cut down on the Restasis burning.
2. How long before I know if Restasis is going to work? I'm going to have to pester him tomorrow to put through another prescription request tomorrow if I want it in three months.
3. Anything else I need to know?
Thank you friends!
Chun :-*
Hi Chun,
My doctor said in order to get the most of your supply, open your first dose at bedtime and save the remaining for the morning dose. Put the vial in plastic baggie to keep it clean, and throw the rest away after the morning dose. For the burning, my doctor recommends keeping the drops in the refrigerator. I did this for a while, but I ended up forgetting to take them more often than not. It does feel much more soothing when the drops are cool, though. I don't notice the burning all that much personally, it's not much different from how my eyes normally feel.
My doctor has seen improvement in my Schrimer's test since I started Restasis. I'm not really sure how much can been singly attributed to Restasis because I have punctal plugs in both eyes, and I also wear Acuvue Oasys lenses that seem to help my eyes retain moisture better. I figure it must be doing some good because I haven't been taken off it yet. I still use preservative-free drops whenever my eyes feel dry throughout the day.
Good luck with your new prescription! I hope it works well for you.
Erin
Hi Erin,
I really appreciate your response to my question about Restasis. I am so nervous about trying it out as it has been so difficult to get. When you say that you put some of it in the fridge overnight, do you mean that you put half of one dose in the fridge? That would really help stretch out the medication considering it is so incredibly hard to get in
Canada. Most opthamologists won't even try to prescribe it because they don't want to try to fill out the paper work.
To others, I have been trying to research it but for some reason I can't access the old Topics pages from Sjogren's world so I can't get to the Eyes pages. Can anyone please tell me how long these drops take to have affect? I need to know how much to push the opthamologist to start filling out paperwork tomorrow so I can get more drops in two months.
Thanks again,
Chun
driedout10,
did you try the search system, just type in eyes, I did and came up with 84 pages of past posts on eyes.
I hope you find what is needed.
kimbo
I used them for a while and didn't notice much difference. However, I don't want to discourage you because everyone is different. They have really helped alot of people.
Quote from: driedout10 on April 14, 2009, 12:19:39 PM
When you say that you put some of it in the fridge overnight, do you mean that you put half of one dose in the fridge? That would really help stretch out the medication considering it is so incredibly hard to get in Canada.
After I take my bedtime dose I put the little twist-off top back on the vial. They keep changing the design of the vial, but my last box has the kind where you can snap the top back on. I put the vial in a baggie and save it for the morning. I take one drop in each eye, so there is enough left in the vial for my morning dose. You have to tip the vial back and forth a few times to mix the solution before you use it, so having the little cover to put back on makes it helpful. I think keeping the opened vial in the fridge also helps prevent bacteria growth. I've never had a problem of running out of solution for the morning dose. It probably depends on your prescribed dose, but I think one drop in each eye is the standard.
No need to be nervous about using Restasis. I've been on it for over 5 years. I have severe dry eyes, and for the first 3 years Restasis helped a great deal. Now, I am on an experimental treatment called serum tears as well as Restasis. Of course I use OTC eye drops throughout the day and night.
Restasis does cause some burning, but no big deal. Wait at least 10-15 mintues after you use it and use over the counter drops if you experience burning. It does take a few months to see a difference.
I hope all goes well for you.
Tina
USA
Thanks to everyone for taking the time to calm my nerves and help me feel ready for my Optho appt tomorrow! I really appreciate everyone's kind support.
Chun ;D
I found the burning troublesome and stopped the Restasis so my eye doc had me do the prednisone drops for a while until my eyes adjusted to the Restasis. So if it bothers you-- get the prednisone drops and stay on the Restasis long enough to see if it brings you relief.
Good luck!
Beach
I couldn't use Restasi because it burned too much, but I was on experimental cyclosporine drops before Restasis and couldn't tolerate that either, so I guess it may be something specific to me. I use Genteal gel, Thera tears (which I like the best of all the drops I've tried) and I have all 4 ducts plugged. Now I may have to try moisture googles. Any one use those?
I definitely use my Restasis more than one time. I have a small blue holder from the company that makes Restasis and it holds the vial up and then I cover it with a glass to keep the tip clean. My ophthalmologist says this is fine to do as long as it is covered...and yes...it stretches the medicine out much longer which is great because its very expensive!
Good luck with it...I've had no problems or bad side effects from it at all and feel its helped me out a lot with the dry eyes!!
Restasis---mention it and you'll have 10 different answers out of 10 (or whatever). The poster who said "no big deal" or "don't be nervous" is the best attitude. I've seen many different ways people were directed to take Restasis by their doctors. Such as......never keep a vial overnight....you can use a vial over two days.......everyone should follow their own doc's particular instructions and then you'll be conforming.
Some people find Restasis stings. I took Restasis twice in my 10 year dry eye career. Once was about 8 years ago and i took it for 6 weeks with no help. I took it more recently for seven months with no improvement. I thought at 7 months, I had a good idea it was not going to help. You definitely have to give it a good run to see if it will help. It can be six months. If it does help, it will be worth it.
If you'd like to check out a dry eye website with tons of information, go to www.dryeyezone.com (http://www.dryeyezone.com) I have no financial interest in this board, but am just a poster like I am here. Lucy
I have moisture chamber goggles that I wear all the time. I have Panoptx. They're expensive, but worth it. They help.
I, also, use the Panoptx moisture goggles. They are a life saver for being outdoors. I use Restasis and it has helped. I really wish it helped more and continue to hope they come out with better treatments.
Anna
I too was afraid of the burning and had none. But later did.. go figure. It wasnt bad though and MOST of the time I did NOT get any burning. I DO get burning of my eyes on its own.. as a symptom. But I LOVE RESTASIS!! NOTHING else did the job as this. I dont remember how long it took and didnt even know it was supposed to take awhile. All I know is that I was not always using it 2 times a day or even 1 time and was ok. As soon as I have dry eyes I use it. Now I only need it at night and once and awhile during the morning.
Its worth a try!!
Jan
If my eyes get worse I may be tempted to give Restasis another shot, although even the patient info suggests it works on a relatively small percentage of us. Desperate times call for desperate measures and you never know when you will be the one something works for. For anyone who isn't plugged I would definately go that route first-although it has risks of its own, I know. Until recently it worked really well for me, and my initial Schirmers was a zero.
My eye doctor recently had me try a new type of drop. It was an off label use and it is a drop used for conjunctivitis. It's new even for conjunctivitis so again was expensive and it helped me just a bit, but my doc said that she had been hearing anecdotal stories from other docs that it does help. You rub it along the eyelash line twice a day. The name escapes me right now (brain fog) ...it was something like Azira, but I will look up my prescription and post it in the hopes that it will work better for someone else. It is odd how one thing will work for one but not for another...I guess that is what makes this illness so difficult.
When I saw a really big mucky muck specialist 10 years ago he told me that Sjogren's was a "hot" disease-lots of research going on, and probably some big break throughs soon, but other than a few meds that sometimes half way work, and things like new gels etc, all of the posts I read make me feel like they haven't moved very far in a decade. Plus every one I know who has it gets told different things by their rheaumies and eye doctors, so I'm not sure even the doctors are keeping up with it all. It gets expensive to try every new thing but on the other hand when you are so anxious for some relief it's hard to let anything go by. I really do get discouraged if I allow myself to think about it too long.