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 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]

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.

[SAAG]

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.

In Canada, the non-prescription anti-allergy drops often do have a decongestant. However, the prescription anti-allergy drops do NOT have a decongestant included.

An example of non-prescription anti-allergy drops that do not contain a decongestant are those containing sodium cromoglycate. (Brand names include Cromolyn and Opticrom.)

As you mentioned though, there are none available here that are preservative free though.

[rooneyandfergie]

rooneyandfergie,

Glaucoma and dry eyes huh? Double whammy.

Hey Jasper, you are absolutely right. Big double whammy. I also have pretty red eyes a lot of the times. I have seen some encouraging reports of anti-vegf hope that would be available soon as a medical option. It's sometimes frustrating to me personally that we can send a man to the moon but we remain lacking in dry eye medical treatment.

I have been using Restasis for close to 2 weeks now. I have also been using eye ointments during the day as well and a new kind of eye drop called Hialid. All these has helped me to see some improvement in my dry eye condition though i dont know at this stage if it was due to the Restasis alone or the other eye products. I will update you on my progress as I go along. Hopefully that will give you some idea as to how effective it can be.

fundryeyes, you seem pretty informed and you mentioned about the doctor flipping your eyelid out to check for signs of allergies. I have done that before as i suspected i may be allergic to my glaucoma medication. I had like rashes or hives on the eyelids pretty often on and off. However the doctor says there is no sign of allergies. Does it mean that the hives is due to a more complex case of my immune system attacking the lacrimal glands and my eyelids?

[fellowresearcher]

Dear people who use Restasis, You said it burns to begin with and causes red eyes...BUT the question I wonder is, does it cause DRY eyes?

When I think about it, Sometimes I wonder if its the castor oil in it that causes the burning...But is this reaction harmful?

See in theory castor oil, isn't harmful to the eye ball...Its not going to scratch it or dry it out....but I do believe It would be responsible for causing a reaction that you all are experiencing.

If you haven't heard of using castor oil as a laxative, it causes a similar reaction in the intestinal track. Castor oil is an irritant to mucus membranes, Why do you think when you take it as a laxative it causes people to have to go to the bathroom.

This irritation is important though I believe...because it might be responsible for the healing of your tear secreting glands.

Why?

Well the redness an burning everyone experiences from so called, said reactions is an immune response.

In this immune response your body sends out chemical called as arachidonic acid to create other immune response chemicals.

One of them is Prostaglandins, they are responsible for dilating blood vessels and regulating hormones, thats why when your eyes are irritated, they get red because because the blood vessels swell and get engorged with blood from this chemical....This chemical is also responsible for regulating the hormones in the specific cells that are irritated such as testosterone or estrogens. Since Testosterone and estrogens are responsible for gland secretions...I believe that their increased quantity during this process helps you....Increase gland secretion...(AKA your tears) I wonder if that's why allergan choose castor oil as a carrier for their drug.

But theirs also cyclosporine in it though, I believe it is partly there to suppress this immune response, but I wonder if it only acts on the chemicals that could cause damage?

Such as the Leukotrienes and platelet-activating factor...? these chemicals are responsible for increasing white blood cells to the infected area, increasing mucus production an telling what the white blood cells what they should attack.

So maybe thats why they have it in there, to create the immune response chemicals, but prevent an immune response attack...

As for those chemicals that create the redness everyone experiences to be explained simply.....is really just a symptom of when your body is trying to heal itself...

So in all guesses.
I guess its really a trade off right now, increased tear production due to Different inflammation...or not being able to have more tears at all?

I honestly believe that the irritation caused by the castor oil, is the method to which more tears are formed. It is the irritation which increases an immune response which in theory hopefully doesn't damage the tissues due to the oils nature and causes more hormones to be produced in the irritated cells in the area...(the burning sensation)...since hormones are increased in the cells...more tears are produced in the lacrimal gland...thus increasing tear production.

You might ask allergan if thats really the theory behind the burning and redness but I believe it is.

[fundryeyes]

Researcher, I've heard that theory before. If the resumption of tears was due to irritation then surely just having a dry eye would make you form more tears. Or Varsol, or mouth wash. Stick that in your eyes and by your theory it should be raining tears! Cyclosporine inhibits the immune system and by doing that locally at the lacrimal glands it should improve the functioning of them. I have been helped by Restasis. My eyes went from completely dry to wet looking and reflective in 4 months. I'm definitely not 100% but it is now manageable. Another negation to that theory is the fact that people seem to be helped more by a 1% or 0.5% cyclosporine solution with the same concentration castor base. There will likely be more copy cat products on the market with higher cyclosporine concentrations.

[nitrodrops]

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!

I am having the same sympton. After applying Retasis, say 3-4hrs later, i can feel the burning/stinging feeling the whole day. It got worse under a hot day or windy day.
Also dont know if this burning/stinging feeling is due to the side effects of Retasis or DES.

I am taking Retasis 4 times per day. Now I have 2 x lower plugs inserted, can feel the Retasis burning/stinging sensation even more. Going to reduce to 2 times per day and monitor it.

Btw, any kind hearts that experienced the same symptons :

I am having the same sympton. After applying Retasis, say 3-4hrs later, i can feel the burning/stinging feeling the whole day. It got worse under a hot day or windy day.
Also dont know if this burning/stinging feeling is due to the side effects of Retasis or DES.


Much appreciated for any kind replies.

Cheers
Nitro

[PotatoCakes]

re: Burning ... it's not uncommon for people to be allergic or sensitive to the carrier in Restasis: Castor Oil. You can get compounded Restasis, without the castor oil through Leiter's Pharmacy in CA (they do mail order). Your doctor calls them up and takes care of the prescription and then they will call you for payment and mail them out to you. Most insurance will not cover compounded Restasis but it is less expensive (I think) than the commercially produced stuff. It does require refrigeration once opened.

When I switched to compounded, I found that it made a real difference in comfort. I no longer had the extreme burning, redness and discomfort after application. Unfortunately, depending on how my eyes are doing, after about 4-5 months of use, my eyes are now becoming sensitive to it. I don't know if that's common or not. It does not hurt as badly as the commercial Restasis hurt but it's definitely more uncomfortable than it was when I first started using it. When I meet with my doctor next, I plan to ask about it and see what I should do from here. So far, it hasn't helped produce tears that I'm aware of so I'm not sure there's much in it for me to begin with but it does help some people so it's worth a try if you haven't yet. I was told by one doctor that it can take up to 6 months for Restasis to work so I'd really like to make it to the 6-7 month mark, if possible. Prior to the compounded Restasis, I was on commercial Restasis for a year or so and it had no effect so it's possible that I'm just not in that 15% or so that it works for.

Also, I was told by one specialist that many doctors prescribe Lotemax with Restasis because the Lotemax helps prevent the body's reaction that causes the burning, etc. I stopped taking Lotemax after about a year because I simply wasn't comfortable taking it but it's very possible that's when I started feeling discomfort after commercial Restasis administration.