Restasis burns/ Please help!

[Jasper]

Hello Everyone,

I'm aqueous deficient (severe) and have tried just about everything. As I need to produce more tears I was really counting on Restasis to help.

When I put the drops in they felt fine ... almost soothing. Then a few hours later the burning would begin and last all day. It was unbearable. If I put artificial tears in my eyes would turn completely red (even more than usual) so I stopped using it after 2 days.

Is there any way around this? I have heard of some people that found the burning to become less and less after weeks of continued use.
There is no way I could make it that long. Any advice would be greatly appreciated.

Thanks!

[Ariel]

A lot of people, including myself, begin using Restasis hoping it will pull them out of the miserable existence life has become for them. The truth is only 50% of those who try it are helped by it. When it works it may take months for its effect to be noticed and even when it does the itching and burning may sometimes be too much of a challenge.

What your eyes are most likely reacting to now is the castor oil excipient. It may be that Cyclosporine can really help you and if the itching and burning is ruining everything it may be wise for you to get a prescription for Cyclosporine with a carrier your eyes can tolerate more easily. There's a pharmacy in Germany that uses liposomes instead of castor oil. If you do some research you may find one in the States that can also do it.

It may also help you to read all the posts about Cyclosporine on this forum. I know of some patients that have used different strategies to deal with what you're experiencing. Instilling a preservative-free tear fifteen minutes before Restasis has worked for some of them. You may also consider getting on Azasite, Doxy and FML or Tremadol to speed up your recovery and reduce some of the pain during the initial period.

[Jasper]

Thanks for the advice Ariel. I'm not familiar with FML or Tremadol but I'll do some research on the net.

[painless]

If there is a kind of artificial tear that you can tolerate, maybe ask a compounding pharmacy if it can add Cyclosporine to it. Then you could figure out whether the problem for you is the carrier or the Cyclosporine.

[nycdryeyegirl]

Hi!

I would also suggest trying a compounding pharmacy, such as Reiter's Pharmacy (which has a online website), where they could customize the Restasis drops by perhaps removing the castor oil and replacing it with something else, if needed.

I would also suggest you contact your doctor and explain the difficulties your having with this medication and perhaps he could make appropriate recommendations to help alleviate the pain and discomfort your experiencing.

I hope I have been of some help to you.

Pam

[Jasper]

Thanks

Thanks for the advice everyone. I didn't realize that there was an online pharmacy that can customize prescriptions - learn something new every day on dry eye talk!

I'll talk to my doctor and let you all know what I come up with.

[painless]

The compounding pharmacy Pam referred to is actually Leiter's Pharmacy. It's located in San Jose, California. I had to use them once to compound a medication for my dog and they were very helpful. Though I am located in the Bay Area, San Jose is pretty far from me, but we were able to arrange everything over the phone and then they mailed the medication to me. It wasn't cheap, but they do provide a valuable service.

[rooneyandfergie]

Keep the faith

Hi Jasper,

Wow, I just realized that I have been promoted to dry eye talk regular. Must have been spending a lot of time on dry eye talk haha. Anway, I started using Restasis about a week ago. Fortunately for me, it doesnt sting too bad. It burns a bit for a while and then it goes off after. However there was one occasion when my left eye turned really red after putting Restasis in. I dont know if this would help but why not try putting Restasis in the fridge. When the drops are cold it would probably help reduce the stinging.

I can give you my experience with glaucoma eye drops. I have been using them for about 3 months now. Initially when i put it in i experienced pretty bad side effects. There was like pretty bad stinging, redness and hives all around my eyes. This carried on for a 2-3 weeks and slowly the side effects subsided as time went on. I believe strongly there is a chance that the side effects will wear off as time goes by.

It is true that Restasis wont work for everyone but it is the only medication around that has an indication for lack of tear production. FML eye drops will probably help to tide you through and make your eyes more comfortable during the adjustment period. However you should avoid using them if possible as they can cause glaucoma. Glaucoma is a serious eye condition that has no cure and could cause blindness if you do not know what it's about. Keep faith in Restasis and try it out for at least 6 months before giving it up. I know it's hard but try to endure the discomfort for a few weeks and hopefully your eye will adjust to Restasis.

[fundryeyes]

I had a similar reaction when I first applied Restasis. You are putting a strange chemical(s) in a very dry, inflamed eye. You need to either start using it once a day then ramp up, or put conventional drops 15 minutes before and after you use the Restasis, then ramp up. You need patience with this product.
The first time I used it I had what looked like ulcers in my eyes they were so red. I now use Restasis up to 6 times a day and have noticed a big difference.
I may eventually get a compounded 0.5% or 1% version.
Dr Latkany says in his book that almost all DES sufferers would benefit from Restasis if they stuck with the program and got the right dose.
It takes a long time for your eyes to heal as it probably took a long time to get dry and symptomatic. The only other thing I take are omega 3's from a few sources. I figure its good for your body regardless of the DES. Good luck.
I believe the next major breakthrough will be a hormonal product. Hopefully I live long enough to witness it ! The challenge with eyes is getting the product where its supposed to go consistently.

[rooneyandfergie]

I now use Restasis up to 6 times a day and have noticed a big difference.
I may eventually get a compounded 0.5% or 1% version.
Dr Latkany says in his book that almost all DES sufferers would benefit from Restasis if they stuck with the program and got the right dose.
It takes a long time for your eyes to heal as it probably took a long time to get dry and symptomatic. The only other thing I take are omega 3's from a few sources. I figure its good for your body regardless of the DES. Good luck.
I believe the next major breakthrough will be a hormonal product. Hopefully I live long enough to witness it ! The challenge with eyes is getting the product where its supposed to go consistently.

wow 6 times a day !!! u r using the regular restasis at 0.05% concentration six times a day? how long did it take for u to feel the effects of the drops after starting using it? I am pretty curious because i just started using Restasis myself and am still pretty much a novice at it.

I dont remember seeing that in Dr L's book but it certainly gives me great encouragement to know that. For my case, the onset of dry eyes was pretty rapid within the span of a few weeks so i am not sure it hormonal products would work for me.

fundryeyes, if u dont mind me asking, may i know what kind of age group you are in and how did you develop dry eyes?

[fundryeyes]

Rooneyandfergie, I am a 44 yr old male. I had a few episodes of dry eyes the last couple of years which were resolved by allergy drops. The optometrist told me I had small bumps under my eyelids. I found the diagnosis kind of weird as I had no tearing or congestion like most allergies but I shrugged it off as just another bizzare health issue. Then March of this year, wham, hardly any tears whatsoever and no bumps under my lids. So something inflamed them to the point they ceased to produce tears. It took three months for the Restasis to show some results, then I read some studies where they claim more is better (unlike most drugs where more is worse). The more I used the better it felt. Some people here are using 1 % cyclosporine which is 20 times more concentrated than Restasis ! Think about that! Thats the equivalent of taking 40 drops of Restasis per day.
Now , I am always cautious when it comes to cause/effect so as a disclaimer I have to say it could be the Omega 3 oils I am taking, or it just randomly got better, which I doubt.
This is one of the few products shown to work and thats why a whole bunch of new cyclosporine drug trials are being done by copycat companies.

[Ariel]

Fundryeyes-- I'm in a similar situation you were and my biggest problem now is that my eyes can't tell me if I need to be taking an anti-allergy, antibiotic, or anti-inflammatory drug. What if they need them all at different times? How do I know which one to use at any given moment? How do I know for how long it should be used?

[Jasper]

rooneyandfergie,

Glaucoma and dry eyes huh? Double whammy. For the last six months I have been on one steriod or another for SLK and surgeries. My pressure is up so I'm actually taking Methazolamide? right now. I know there is another name for this drug but I can't think of it at the moment. Guess I'll have to wait to try Restasis again.

Thanks for all the tips everyone!

[fundryeyes]

Ariel, from my experience if you have allergies and a histamine reaction, an antihistamine drop and/or pill will make you feel better fast. If it is inflammation by more complex cells of your immune system, there will be no relief after taking an antihistamine. Apparently the small bumps under the eyelids (the doctor has to flip your eyelids) are a telltale sign of allergies. If your immune system attacks the cells of your lacrimal glands there is no visual evidence. Except for dry eyes of course! I would take antihistamine drops as a prevention if they were available without preservative. But from what I hear there is no such product. And the ones on the market have a decongestant in them too. That makes dry eyes worse.

[dianat]

I have a friend who couldn't tolerate Restasis as prescribed, so he just used it at night before he shut his eyes to go to sleep. He only used it once per day, but eventually saw improvement.