Burning with restasis

[Laura]

Hello everyone I have ben reading this forum for months now but have not posted untill now.My Husband had a stem cell transplant in January this year for Leukemia.Due to the Graft vs Host Disease his eyes have been damaged and no longer produce tears.He has been trying Resasis but when he puts in his lubricant drops(preservative free)his eyes severly burn. I know that it is to be expected but this is bad.Does this mean anything I dont know about??Oh yes, through reading this site I advised him that some prepare the eyes with a steroid drop first,which he did.
Any advise would be most appreciated
Thanks

[Guest]

I had a problem with Restasis for the first couple of months of using it, unfortunately one of the side effects listed on the literature is ocular burning.

Even now, 5 months on, it is still unpleasant but bearable when I put it in as it feels like it destablises my already compromised tear film (particularly of a night) but settles after about 1/2 hour.

I am not sure about preparing the eye with a steroid drop, I and a lot of other people use their "regular and reliable" non preserved artificial tear about 15 minutes before Restasis.

My only personal experience with Steroid drops was a 10 day course to bring my inflammation under control and I was told to put it in about 15-30 minutes before the Restasis, and not to use anything else for at least 15-30 minutes after instilling Restasis.

I am not sure what others think but possibly an ice pack after putting in the Restasis may help with the burning sensation. I am a regular ice pack user, I find it is the only thing that helps with the burning sensation.

I hope your husband can find a workable solution very soon.

Ian

[nan]

restasis/steroid drops

one word of caution. i used steroid drops and found out i am a 'steroid-responder', meaning my intraocular pressures increase dramatically with steroids of any kind. it is rare, but if anyone uses steroid drops for anything, have your pressures checked. high pressures can lead to steroid-induced glaucoma. sometimes doctors forget to mention checking pressures with steroids as it is a rare case to have the response, but it is worth checking.

[kitty]

Personally, I found nothing that would make the burning tolerable, other than to just close my eyes. That was rather inconvenient for the morning dose of Restasis. It was the intolerance to the burning, as well as the other side effects that resulted in me stopping the Restasis entirely. Everyone is different though.

[kaypeeoh]

Restasis is cyclosporine. This is an older drug used to prevent transplant tissue rejection. So theoretically it could help in the case of grant rejection. I was told by my prescibing doctor that restasis often causes a burning sensation but this is temporary. Evenually the eyes become less irritated by the drops. Maybe use a cold compress shortly before and right after the drops are put in?

[Judy]

Another idea with Restasis (which has been posted before) is to refrigerate the Restasis. The coolness feels so much better. Many of us do this with our regular drops as well, such as Refresh Plus, etc...

[kitty]

Another idea with Restasis (which has been posted before) is to refrigerate the Restasis. The coolness feels so much better. Many of us do this with our regular drops as well, such as Refresh Plus, etc...

Please read the drug insert re storage temperature. Refrigeration is not recommended.

[Laura]

Thank you all very much for your replies
We do use a very cold cloth for the burning and your right,Ian, it somehow does help relieve his burning.
So I guess its a waiting game everyday is different.Yesterday was a bad one I beg for some peace for him today.

[JJ75]

Please read the drug insert re storage temperature. Refrigeration is not recommended.

That's interesting... Every opthamologist I know of highly recommends refrigerating it...

[kitty]

Per the package insert

I believe another thread discussed this, and through a third party a drug company rep said that Restasis becomes unstable and loses its effectiveness if refrigerated. Maybe that's why it feels better going in after it has been refrigerated? Hopefully my mind is not playing tricks on me re the other thread!

Restasis package insert

How Supplied
RESTASIS® ophthalmic emulsion is packaged in single use vials. Each vial contains 0.4 mL fill in a 0.9 mL LDPE vial; 32 vials are packaged in a polypropylene tray with an aluminum peelable lid. The entire contents of this tray (32 vials) must be dispensed as one unit. RESTASIS® 32 Vials 0.4 mL each - NDC 0023-9163-32
Storage: Store RESTASIS® ophthalmic emulsion at 15° to 25° C (59°-77° F).

[green eyes2]

I had burning when using Restasis but not immediately upon instillation. It was an ocular-type burning that started about 30 minutes afterwards which continued until the next dose. I even tried using Restasis with a steroid, Alrex, and it still produced the same type of burning. On top of that, the Alrex dried my eyes out even more. Dry eyes is one the side effects listed on the package insert for Alrex. Mind you, the reason I was taking Restasis and Alrex was due to dry, burning eyes! So, this was insult added to injury. I tolerated the Restasis alone for months, but the burning did not subside. I could tell the Restasis helped me, though, because after I stopped taking Restasis my eyes had improved a lot, but a few months later the dry eyes were back in full force (though still not as bad as they were to begin with before Restasis).

If your husband's case is severe and nothing helps, you can check into the Boston scleral lens. Their website is http://www.bostonsight.org/ The man you need to speak to is Bill Rosenthal. He is very helpful and can give you an idea as to whether or not to pursue sclerals. They are very expensive, but your insurance may cover it. It's definitely worth looking into if all else fails, esp. for graft vs host disease. The last profile on their website is someone with that problem who was helped by sclerals. My dry eyes are idiopathic in nature, but I have received a doctor referral (mandatory) and plan to travel to Boston soon to get these lenses.

[Rebecca Petris]

If your husband's case is severe and nothing helps, you can check into the Boston scleral lens.

I contacted them yesterday about use of sclerals in patients like your husband and they have study data demonstrating 97% success rate with sclerals in GVHD patients. Definitely worth looking into if your husband is not helped by other available treatments.

[calli66]

My 2 cents on refrigerating Restasis

I believe another thread discussed this, and through a third party a drug company rep said that Restasis becomes unstable and loses its effectiveness if refrigerated. .

First, I haven't found any reasons why Restasis can't be refrigerated except for "it becomes unstable" (how? why?) and because the "drug company rep says so."

I can understand not refrigerating the whole box of unopened vials--there would be no reason to do this. But what we're doing is refrigerating the opened vials so that we can actually use up the drops instead of throwing them away--and so they don't grow bacteria while sitting at room temperature. A company rep likely knows that this is a common practice--even recommended by ophthalmologists. The company has commercial interests: they want: 1) for you to buy more of their product; and 2) they want to avoid liability for any infections caused by bacterial contamination from re-used vials.

So it's still not clear to me what the answer is. For 6 months, I have been refrigerating the opened vials because my housing (where I work 4 days a week) has no air conditioning, and the temperature in the rooms can rise to a 100 degrees. Now I KNOW keeping an open vial--and maybe even a closed vial-- in that heat would not be good for Restasis.

And unless I'm truly fooling myself, I am continuing to see improvement in my dry eye condition and definitely more tear production while I am using this refrigerated Restasis that should theoretically have "lost its effectiveness" through becoming "unstable."

Sorry, but sometimes I don't take the drug insert information in any medication as complete gospel.

C66

[Laura]

Thanks very much for your replies.I have done some research of the scleral lenses when he first began this condition thinking "omg I hope it never gets this severe"Well I think it has
He has spent a week of pain and burning in his eyes.This obviously disables him from doing much of anything at all other than mostly listening to tv.and is very depressed(who would'nt be )

Does anyone here get blurred vision with dry eyes???????????????

Is there a specialist Dr for this sort of condition?

Laura

[Rebecca Petris]

The company has commercial interests: they want: 1) for you to buy more of their product; and 2) they want to avoid liability for any infections caused by bacterial contamination from re-used vials.

This kind of goes without saying, doesn't it? I mean, all pharmaceutical companies exist to sell products, and liability claims reduce profitability. Usage guidelines are dictated at least as much by what the FDA allows, as by what the company prefers, so however heartless we might think a pharma, I don't think the link to its product labelling can be as direct as this suggests.

Please understand that I am very sympathetic to the cost burden for dry eye patients with both OTC and prescription meds and I think that it's quite fair to question the reasons for some guidelines. But in internet forums like this we have to remember that what we say may carry more weight with others than we are aware. Since this discussion is going on at some length I do feel a need to step in stress that no one here should rely on discussions here about safe/effective usage of an Rx or OTC drug to make decisions about their own use of a product. If they are going to depart from the manufacturer's labelling they should do so only with the concurrence of their doctor, not on the basis of someone else's experience or opinion.

Incidentally, not all answers are obvious. It is often thought that it's fine to refrigerate any and all artificial tears, despite the labelling. It so happens that Dwelle and Dakrina are much more sensitive to cold than heat; they should not be refrigerated as they may become unstable. There is no way I would have known that from any labelling or any clinical trial data or anything else, and the only way I know is because Dr. Holly said so.