Restasis Drop Out

[Natalie06]

After my last Schirmer test score of 0 (both eyes) the specialist really wanted me to start Restasis again. I had stopped because it made my eye pain, foreign body sensation and itching worse. And the burning was terrible.

But I agreed to give it another try and refrigerated it like she told me. After less than a week, my upper lid margins were swollen and flaking, the foreign body sensation was horrible and I was using more eye drops than ever. I called her office but she was on vacation. The covering MD told me to stop using it immediately.

Has anyone else experienced this? Do you need to build up a tolerance for this stuff or what? I am really stumped on what I can do to help produce more tears. I've had plugs but they made the bleph worse and actually stopped working after 3 weeks. She definitely does not want to plug me again.

I am currently on Doxy 100mg daily and will be for at least another 6 months. I am still not sure if I have bleph due to ocular rosacea or hormonally induced MGD or both.

BTW, I am also using Lupron Depot for hormonal suppression and am going to ask my endocrinologist about androgen therapy. I emailed him Friday but he was out of the office. Has anyone else tried this?

Thanks so much.

Natalie

Lasik induced severe dry eye.

[Rojzen]

Concerted use of oral supp. and Systane to prime surface for Restasis

The Biosyntrix dry eye oral supplement was, when I took it, something that patients would use to prepare for Restasis. . .Sometimes, the supplement, which contains a variety of oils and even a mucin of sorts, would help to heal the ocular surface enough so that the Restasis would sting less, on contact. . .The literature on the Biosyntrix product specifically mentioned this strategy, if I recall. . .

I'm also wondering whether it might be smart to try Systane for a few weeks, very concertedly, to prepare for Restasis. . .Since the guar in Systane has a good record of patching dry areas on the cornea (and, I think, on the conjunctiva), and, I think, promoting healing of the tissue, maybe if one prepped the corneas with Systane, the Restasis would be easier to tolerate. . .

In any case, now that there are several products that seem to promote surface healing, any of these, and/or the oil supps., might make a positive difference. . .Please forgive, Natalie, if you've done all this and this seems off base. . .Just wanted to be sure you ruled this sort of approach out. . .

Related to this approach, btw, would be an extended period wearing goggles or chambers. . .The corneas might moisten enough, under extended protection of this kind, to be able to take the Restasis lots more easily. . .

[calli66]

After my last Schirmer test score of 0 (both eyes) the specialist really wanted me to start Restasis again. I had stopped because it made my eye pain, foreign body sensation and itching worse. And the burning was terrible.

Hi--my eyes aren't quite as dry--2-2 Schirmers (I have not had Lasik). The first time I tried Restasis, it burned like @$^%&*, so I gave up after 3 months. I waited for a year, got my eyes in better shape, and went back to it for 8 months straight--2 x a day, and it didn't burn so much.

Had another Schirmers then, it was 2-3--so there wasn't much change for me. I have lowered the dose to once a day because I get chronic irritation and swelling of cornea and lids from using Restasis. I'm still hoping that it's doing some good, but have my doubts.

Have you tried putting the drops in right before bed and CLOSING your eyes? I find the burning is less if my eyes aren't exposed to air right away. After the pain subsides a bit (for me, 15-20 minutes) I put in gel and tranquileyes goggles and go to sleep.

C66

[katia]

Hello Calli

It is interesting to see that you reduced the dose to once a day. I was wondering if anyone was using restasis just once a day, as I use the cyclosporine mixed with maize oil here in France unlucky us we don't have the restasis, and the effect is so terribe with the dose in the morning that I want to supress it but I was wondering if the once a day will still have an effect on improving the tear flow.. Did your ophtalmo tell you that you could use restasis like this?????
Restasis never created this burning effect on me, so I don't know what advice to give you but I have been told that the main thing is to keep restasis for 30 mn or so, after you can follow with any other drops you want.

Hi--my eyes aren't quite as dry--2-2 Schirmers (I have not had Lasik). The first time I tried Restasis, it burned like @$^%&*, so I gave up after 3 months. I waited for a year, got my eyes in better shape, and went back to it for 8 months straight--2 x a day, and it didn't burn so much.

Had another Schirmers then, it was 2-3--so there wasn't much change for me. I have lowered the dose to once a day because I get chronic irritation and swelling of cornea and lids from using Restasis. I'm still hoping that it's doing some good, but have my doubts.

Have you tried putting the drops in right before bed and CLOSING your eyes? I find the burning is less if my eyes aren't exposed to air right away. After the pain subsides a bit (for me, 15-20 minutes) I put in gel and tranquileyes goggles and go to sleep.

C66

[kitty]

I had a severe reaction to Restasis each time I used it. It turned out that Patanol, used to treat eye allergy symptoms, actually reversed the side effects I was experiencing from the Restasis. I was allergic, enough said. My eye doc had told me to use drops 15 min before and after using Restasis, and he also instructed me to use Restasis only once a day. I figured if the only way I could tolerate it is with a chaser of preservative filled Patanol, then it was just not worth it. You are not alone, fellow drop out!

[calli66]

Did your ophtalmo tell you that you could use restasis like this?????

I honestly don't remember. I did it first, then told him, but I'm sure he didn't hear or care. I figured it couldn't hurt, and it might help just to use it once per day.

I was successful using it twice a day for 8 months, but for me, the adverse effects really built up to a crescendo. I don't mean the daily burning---that's a "given." I just realized that every morning after a dose, and for half the day, my eyeballs felt "swollen."

The worst part for me, is that ---at 2 x per day, I really believe my vision becomes worse. It's not the drops in the eye--it's way beyond that. I get more near-sighted and my astigmatism really bothers me. I don't have an explanation about why, or how, Restasis would do this, but I know that when I cut down to once a day, my vision symptoms improve.

C66

[Natalie06]

Thanks everyone!

It's not just the burning that is the problem. It's the cumulative effect after 4 or 5 days on it that I can't handle. The sowllen eyelids, crusting, discharge and then my vision goes downhill with it. Also increased light sensitivity. I am not spending another summer hiding in my house if I can help it, especially for a drug that doesn't work in 20% of the population. And then it takes 4 or 5 days to reverse the effects.

It may be that my eyes are just too bad right now to tolerate it or maybe using it once a day, building up to twice a day may work at some point.

I am going to pursue the hormonal connection since I know as long as I am on Lupron Depot, I am fighting an uphill battle.

Thanks so much for sharing your Restasis experiences with me. It's always reassuring to hear that I am not always an anomoly.

Natalie

[Rebecca Petris]

...especially for a drug that doesn't work in 20% of the population.

Out of curiosity where did that statistic come from? I thought it was the reverse (i.e. it works in 20% of the population). Most doctors I have spoken with seem to feel that when it works it works well but that the percentage is fairly small.

[bassfan]

restasis

Natalie,

I tried Restasis in July of last year during my former "not that bad dry eye" lifestyle. At that point my eyes were fine the vast majority of the time, but I have always had problems wearing contacts so was attempting to fix that which is a whole other story involving a few misdiagnosis issues. Anyways, I took restasis for three weeks before I stopped. I did not have much, if any, burning sensation when using the drops. About 2 weeks into it however my eyes took a drastic turn for the worse and have never really gained much at all. My eyes became terribly dry for a little less than a week when I called my doc and said something was wrong. He had me in the next day and at that point started on like every steroid drop in the book with nothing working. I despise that doctor now for numerous reasons not mentioned here. I guess my point is that I had drastic issues with Restasis and as far as im concerned, it is what has caused my "much more severe than before" dry eye disorder.

Daren

[Natalie06]

More...

The MD wants me to go back on Lotemax 2 x per day for 2 weeks and then add the restasis 2 x per day on top of the Lotemax for another two weeks and then come back and see her. I have mixed feelings as I am having a lot of pain and discomfort. But I don't have any better options. It was very warm over the weekend and the AC kicked in at work. Today was a real killer.

Rebecca, the 20% was the MD. I did not question it as she is a dry eye specialist. But your statistics are way worse. I am pretty sure I heard her right.

I spoke with my endocrinologist today and the only HRT with androgen on the market is something called Estratest, which also contains estrogen. Since the whole point of Lupron therapy is to keep my estrogen as low as possible, that does not seem worth experimenting with.

So I am off to order a drug called Tibilone which fortunately I can get from an overseas pharmacy without a prescription...and yes, my MD knows I am doing this as I have done it in the past.

Thanks again for all the feedback.

Natalie

[calli66]

The impression I'm starting to get is that doctors prescribe Restasis for every dry eye patient regardless of why they have dry eye. Sometimes they seem just as bad as the "miracle" vitamin salesmen on AM radio, because they've caught on to the newest "fad" drug.

And the worst part is, they start off pushing Restasis right in the beginning--with little understanding that really raw, inflamed, seriously painful eyes are not going to adjust to the drops.

Dr Latkany's approach is surely a better one--to investigate the causes, educate the patient, and teach the patient how she/he can help themselves.

C66

[Rebecca Petris]

The impression I'm starting to get is that doctors prescribe Restasis for every dry eye patient regardless of why they have dry eye.

That is exactly right. In many practices Restasis is practically a first-line treatment now for anyone complaining of dry eye. This is an inevitable, if unfortunate, result of it being "the only prescription drug for dry eye" - especially in a world where the doctors do not bother to figure out why the patients have dry eye.

It is also directly related to aggressive consumer advertising. Restasis is the first eyedrop since Visine to become a familiar name.

[KimH]

I can't tell if it's working or not

I'm not sure if Restasis is helping me or not. When using Restasis I still have to use OTC drops many times a day. My eyes still get dry when I go into stores, or A/C, or wind. The big difference is that without Restasis my dry eyes feel scratchy when they get dry. With it, they burn when they get dry. Has anyone noticed a similar pattern? I stopped using R a few days ago to try to compare, my eyes seem drier than before I tried R.