Restasis and Burning

[Joey]

I have searched these posts, and there seems to be a lot of people experiencing burning with Restasis. I am one of them. The burning is horrible. It happens about mid-day and is not going away. Can people who have experienced burning with Restasis please post what has helped with the burning.

Dr. Latkany said that there are several methods to treat the burnng, but does not list any.

[Kathel]

Keeping it refrigerated helps a little. Good luck,

Kathel

[Rebecca Petris]

Dr. Latkany has mentioned Lotemax, which is commonly prescribed along with Restasis. Others here have mentioned other things from a course of steroids before starting Restasis (classic) to allergy drops or both.

The clinical trials for Restasis indicated 17% experiencing burning and I have heard a wide range of numbers from doctors, including 50% from a doctor I met at a conference who is one of the top Restasis prescription writers in the country.

Clearly people are describing the burning in various ways, suggesting different issues. Here are at least a few of the patterns I've observed on the boards here:

1. Burning upon instillation

2. Little or no discomfort upon instillation, but a persistent burning or other discomfort that always starts within a few hours of instillation

3. Major reaction, with symptoms including pain, inflammation, severe redness etc. and which typically take some time to subside even after discontinuing the drug

I may be wrong (and bear in mind I've never tried the stuff myself) but it seems to me a reasonable assumption that the steroids and other tips/tricks (designed to help people tolerate the Restasis long enough to see whether the cyclosporine will actually help the dryness) cannot be expected to work equally for each group.

[GeorgeT]

Hi Joey,

I have the same type of Restatis burning as you. It seems like water upon instillation at 8 am and around 11 am the burning sets in very bad for the whole day . I cannot do anything in the afternoon ......
For us, if you keep Restatis refrigerated or not does not matter.....cause we don't have any burning for about 3-4 hrs....
I gave up on it. Please let us know if you get used...

All best,

George

[Joey]

Thanks for your posts. Yes, for me it is more #2. "Little or no discomfort upon instillation, but a persistent burning or other discomfort that always starts within a few hours of instillation."

I do actually have Lotemax. How do you use the two in combination? Do you use the Lotimax before or after?

[GeorgeT]

Hi Joey,

Please follow the link with Dr. Latkany's recommendation:

http://www.dryeyezone.com/talk/showthread.php?t=3861

I am giving up on Restatis for a while due to intolerable pain.

Good Luck and Keep up posted!!

George

[calli66]

Restasis and delayed burning

It seems like water upon instillation at 8 am and around 11 am the burning sets in very bad for the whole day . I cannot do anything in the afternoon ......
For us, if you keep Restatis refrigerated or not does not matter.....cause we don't have any burning for about 3-4 hrs....

I'm bringing up this topic again, because I have just started experiencing the delayed burning, since making 2 changes in my eye health. First, I quit wearing contact lenses, and second; I got 4 plugs.

Now I'm trying to figure out what causes this. I put the drops in when I get up in the morning, and then around mid-day, my eyes start to burn. The intensity builds and I start to make the reflexive tears---like I'm crying. The tears intensify the burning even more. The tearing and burning are awful---afterwards my eyelid tissue is just pulsating with pain!

If I rinse my eyes with saline, dry them off, close my eyes for awhile, it sometimes helps. If that doesn't work, I put Genteal Gel in them and close my eyes.

I didn't have trouble when I was wearing my contact lenses. I used Restasis twice a day. Now, my eyeballs are exposed. I wonder if this sets them up to reacting to the air---or some combination of Restasis/air combination that's toxic.

It's so weird. At first I thought it was exposure to air pollution (I've been working outside), and then I thought it was the urethane varnish I was working with (volatiles). But no, it happens regardless.

I thought, maybe it's because I have plugs---maybe there's TOO much cyclosporin in my eyes. I had to stop using it for a couple days (and the burning didn't occur), and then last night I put it in at bedtime and closed my eyes. Seems to work OK, and I put in Gel during the night.

Anybody have any ideas about what's going on?

Calli

[Judy]

When I read of people that having such burning pain in their eyes so delayed after using Restasis (3 or 4 hours or more) I find it hard to think it is the Restasis causing the burning. Or how would one ever really tell? I guess if you go off Restasis and the burning goes away, right? I'm so sorry to hear of all who are not having success with Restasis as it has helped me so tremendously....

[kitty]

Restasis should not be refrigerated. Please read the insert. My eye doctor suggested a good dose of artificial tears 15 minutes before and again 15 minutes after using Restasis, to form a sort of barrier. It really didn't help me. The burning and itching hit within seconds of instillation and lasted all day/all night depending on when I put it in. The only thing that stopped this reaction was Patanol, and that contains BAK. I could not see the benefit of treating one drug's side effect with another drug that can have bad long term effects. I stopped the Restasis all together.

[Rojzen]

yet another variation

Just to demonstrate the infinite varieties in which we come, I wanted to chime in that for me, over a nearly 4-year period, Restasis burned on instillation, but then seemed to eliminate completely the chronic burning I'd had during the years before Restasis became available.

Though my burning on instillation was not too bad, I started on BioTears oral supplement, at one point, which was touted as helping the ocular surface tolerate Restasis more easily.

I was intrigued by an earlier reference, in this thread, to the possible relationship between extended burning caused by Restasis and the volume of one's tear meniscus. . .

In case that's relevant: I have essentially no stable tear on my eye at any given time, because of my TBUT of 0 sec. Could that be why Restasis doesn't cause me burning pain after instillation? Perhaps it vanishes with my tears, immediately after instillation. . .A propos, I always felt that the second I put Restasis in, I had an icy cold evaporation feeling, along with the momentary burning. . .

That said, I'm still on my Restasis hiatus, trying FreshKote and Dwelle as potential replacements. .

[Terri]

Burning on installation diminishing as ocular surface heals

My experience with Restasis is different from those above. My right eye is severely dry, but my left is not. I experienced mild to moderate burning during the first 15 minutes of using Restasis, but only in my right (dry) eye. My left had no problems. (I use Restasis in both eyes on the recommendation of my opthalmologist. He said my left eye was mildly dry, even though I don't notice the symptoms, probably because I have been obsessed with my right eye since the onset of DES.) I always used other eye drops after waiting for 15 minutes to relieve the discomfort from Restasis.

I began to theorize that, in my case, the difference in effect was due to ocular surface damage in my right eye which was not present in my left. I have been concentrating heavily over the last two weeks on repairing that damage by wearing Tranquileyes goggles at night (for lagophthalmos), warm eye compresses once per day (to stimulate MG function), protecting my eyes outside with sports goggles, and using Bion Tears and Thera Tears as needed (which have different chemical properties that have been shown to promote ocular healing).

As my right eye has begun healing (which I can actually see myself in the mirror), the burning sensation from Restasis has diminished, and today it was gone completely. I don't know if this approach will help anyone else, but it seems to have worked for me.

[claire]

Restasis systemic effects?

I am 9weeks post op Lasik and have terrible burning all the time. Have been on Restasis for 3 weeks, which also causes burning! I have had osteo arthritis for several years, really bad during California cold wet winters. My hands and other joints cause unremitting pain.
Immediately after starting the Restasis, the arthritis pain was gone!! My hands are still stiff, weak, cold, but the pain is gone! This tells me that the Restasis has big systemic effects. Anyone know about this?
By the way, can't tell if the Restasis is working or not.

[Terri]

Immediately after starting the Restasis, the arthritis pain was gone!! My hands are still stiff, weak, cold, but the pain is gone! This tells me that the Restasis has big systemic effects. Anyone know about this?
By the way, can't tell if the Restasis is working or not.

From what I've read, there is no evidence that the cyclosporine in Restasis migrates beyond the eye. They have not detected it in the bloodstream or elsewhere in the body. However, it would be interesting to know if others with arthritis have found pain relief while using Restasis.

I finally stopped using Restasis about three weeks ago, following eight months of use. I couldn't tell if it was making a difference anymore, so I decided the more conservative strategy was to discontinue its use. I think it helped for a while, but now that I've begun treating the causes of my dry eye (and not just the symptoms), the inflammatory cycle that Restasis supposedly addresses is being dealt with through other means.