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Thread: restasis

  1. #1

    restasis

    restasis really burns and is really uncomfortable but at the end its worth it. i took it twice for three months each time and my eyes are better

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    Hi Ken,

    Welcome to Dry Eye Talk. I'm glad to hear you had good results with it. Would you mind if I ask for more specifics? What were your symptoms before and in what way were they improved? Did you improve both in terms of how you felt and objective testing?
    Rebecca Petris
    The Dry Eye Zone

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    Restasis post-LASIK

    Quote Originally Posted by ken maller
    restasis really burns and is really uncomfortable but at the end its worth it. i took it twice for three months each time and my eyes are better
    I'm glad you posted this, Ken.

    I have observed that three of my patients who were post-LASIK and who had all four puncta occluded subsequently developed epiphora and had to have some of the plugs removed after being on Restasis for several months.

    To my knowledge, I have not seen this reported in the literature.

    DrG

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    Quote Originally Posted by DrG
    I have observed that three of my patients who were post-LASIK and who had all four puncta occluded subsequently developed epiphora and had to have some of the plugs removed after being on Restasis for several months.

    DrG
    I've heard of this happening, in fact I think it's been mentioned here on the BB. Which interests me, not least because the Restasis website says that increased tear production was NOT seen in patients using punctal plugs (see this link).
    Rebecca Petris
    The Dry Eye Zone

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    Quote Originally Posted by Rebecca Petris
    I've heard of this happening, in fact I think it's been mentioned here on the BB. Which interests me, not least because the Restasis website says that increased tear production was NOT seen in patients using punctal plugs (see this link).
    Maybe mentioned, but not published specifically as a post-LASIK remedy. I'm researching this as I speak.

    Anyhow, I've been given two explanations for that. One is that it was never investigated in clinical trials. The second explanation is that punctal plugs are considered maximum medical therapy, and so you would be medicating a subset of patients whose dry eyes were already being managed with confounding of treatments.

    I'm talking here about post-LASIK patients whose eyes are so dry that they need upper and lower plugs, and then struggle and so we add the Restasis.

    DrG

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    Like I said I'm glad the point has come up. It's really a dilemma for patients (and presumably for their doctors). How long is long enough to try a product before giving up - especially if it is causing a great deal of discomfort? In a more limited sense we have this issue arise with Dwelle and Dakrina, which, in a small percentage of patients cause some stinging immediately upon instillation. It's kind of a different issue with these drops because people expect OTC ATS to feel good immediately and if they don't, patients don't want to go on (even if using it for several weeks will ultimately be beneficial, which we've seen repeatedly).

    So what I'm trying to say is that I've got sympathy for both the docs and the patients in this situation. The doc gets understandably frustrated with his/her noncompliant patient, because s/he's got confidence based on the track record that there's a strong chance the patient will be improved by persisting with the drug, but the patient says to himself, gee whiz, I'm already in constant pain and you want me to undergo this awful burning just on the off chance I MIGHT eventually get better - and even if I do get better how will I be certain it was the drug, as opposed to that supplement or ATS or I was taking or the fewer seasonal allergens or the fullness of the moon?

    ...Ramblings (grumblings?) from Rebecca's desk. Such are some of the struggles of finding a balance in the chronic dry eye world.
    Rebecca Petris
    The Dry Eye Zone

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    Dilemma

    Rebecca, I think you should have the last word on the subject. I'm sure you are much more business savvy than I, and I respect your judgement. You certainly understand the dilemmas better than I. I've literally got Alcon coming in the front door while Allergan exits the back door. Sometimes they bump into each other.

    I wouldn't hesitate to participate in a double-blind, randomized clinical trial comparing Restasis to Dakrina if you ever get one organized.



    DrG
    Last edited by DrG; 13-Sep-2005 at 13:32. Reason: clarification

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    Quote Originally Posted by DrG
    Rebecca, I think you should have the last word on the subject. I'm sure you are much more business savvy than I, and I respect your judgement. You certainly understand the dilemmas better than I. I've literally got Alcon coming in the front door while Allergan exits the back door. Sometimes they bump into each other.

    DrG
    Hmmmm. Now I'm not sure exactly how to take that. I wasn't trying to get the last word. The fact is I was so interested in what you both said that I was trying to prolong discussion on it, because I want to hear more, but when I get interested I start running off at the mouth (fingers?).

    I am not trying to detract from good results from Restasis, in case you got that impression. Quite the contrary - I personally know many patients who have benefitted and many eye doctors who are strong believers in it - and I cannot help but be grateful for that. And if the "tone" here sounds anti Restasis from time to time, it should be pointed out that a website like this will inevitably, for obvious reasons, attract a disproportionate number of Restasis "dropouts" (whether because it didn't work or had unacceptable side effects or both), - or dropouts of any other Rx or OTC remedy - because it's the people who have not succeeded with standard remedies that get online looking for that elusive "something else" that might make their condition more manageable. (Much like a D'Eyealogues or SE/VSRN will quite naturally attract people with unresolved and possibly unfixable LASIK complications.)

    This discussion actually made me sit back and think about the little grudges (if they can be called that) that I do in fact hold against Restasis based on what I'm hearing from the crowds, and after reflection I found that neither of my pet peeves has to do with the drug per se and both may be founded more in distant impressions than facts.

    I'll spill my guts and be really frank about them because I'd love to get a contrary view to balance out mine. They are: 1) that while it's not long ago that cyclosporine was really considered kind of an end-of-the-line dry eye treatment and rather strong drug, I am somewhat disturbed by how commonly it seems to be prescribed now for even relatively mild dry eye complaints; and 2) that I keep hearing of the recommended treatment period being stretched out: "Try it for a month" becomes "Keep at it three months" becomes "You need to take it for six months to get the full benefit" becomes "You may have to stay on it for a year before experiencing improvement" becomes "You may need to be on it permanently". I have heard this repeatedly from patients in all different locales who have not yet experienced any objective or subjective relief and it bothers me greatly. What kind of precedents for this are there in Rx?

    Truthfully, the scenario of the elderly patient or patient on disability calling our office to request free Dwelle samples and saying "I can't afford Restasis any longer" - and who goes on to say that s/he had been on it for, say, a year without perceived benefit - has become so routine that would be tempted to rename Dwelle "Poor Man's Restasis" if it wouldn't be sure to offend every rich or poor male and female human on the planet and get us sued in the process What you & Ken (or should I be saying Dr. Maller?? I was wondering whether that's Ken Maller OD) are suggesting - sticking with it for a few months - seems reasonable to me, but the stuff I'm hearing from patients, particularly bady off or uninsured ones, really deeply bothers me. That is probably part of what prevents me from sounding more positive about the drug on this BB.

    Gee, I must have been overdue for a good long rant about something. Can you tell

    I wouldn't hesitate to participate in a double-blind, randomized clinical trial comparing Restasis to Dakrina if you ever get one organized.
    Glad to hear it. It would be wonderful. It will be some time before we're in a position to pursue it seriously, but I think the time will come.
    Rebecca Petris
    The Dry Eye Zone

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    I'll spill my guts and be really frank about them because I'd love to get a contrary view to balance out mine. They are: 1) that while it's not long ago that cyclosporine was really considered kind of an end-of-the-line dry eye treatment and rather strong drug, I am somewhat disturbed by how commonly it seems to be prescribed now for even relatively mild dry eye complaints; and 2) that I keep hearing of the recommended treatment period being stretched out: "Try it for a month" becomes "Keep at it three months" becomes "You need to take it for six months to get the full benefit" becomes "You may have to stay on it for a year before experiencing improvement" becomes "You may need to be on it permanently". I have heard this repeatedly from patients in all different locales who have not yet experienced any objective or subjective relief and it bothers me greatly. What kind of precedents for this are there in Rx?
    Well, as the once most prolific poster on SE/VSRN, I was privileged to render my opinion on all topics surrounding RS, and I certainly remember airing my concerns with the long-term use of cyclosporine. But, that was based upon the fact that the "chief" use of cyclosporine was an oral anti-rejection drug for organ transplants. Now we have safety and efficacy data for the topical version, and there are no requirements or advisories for liver function testing, although sceptics of the FDA may not take comfort in that. Anyway, solving an immediate painful problem frequently takes precedence over any vague discomfiture over possible longer term effects. And, of course, this immediate painful problem just happens to be a long-term chronic problem, so why not stick with the program as long as one can afford the treatment?

    With respect to precedents, I would suggest looking at glaucoma, or any other chronic disease, where the patient is using the medication for life, or until it doesn't work anymore, which is frequently the case, in which case they try something else that may not work either. I guess if somebody could no longer afford Restasis after a year or more without perceived benefit, then they have just provided two good reasons to stop using it.

    The only reason I brought it up at all -- and I also mentioned it on another board a couple of days ago -- is that it does provide evidence, although not statistical, that Restasis can work with post-LASIK dry eye, or at least on patients whose dry eyes were exacerbated by LASIK. The psychological impact of being able to remove a couple of punctal plugs in a semi-depressed, anxiety-ridden, quadraplugged post-LASIK contact lens wearer is quite a major event. If anything, it should serve to strengthen the resolve of a few patients whose resolve is wearing thin just a few months short of achieving a modest victory.

    DrG

  10. #10
    funny that this discussion should take place today.. I have had aqueous deficient dry eye for 6 years now, although one specialist (dr Gilbard of theratears fame) i went to see thought it was MGD. I have been taking restasis religiously for eight months now and nothing else. I went to see my eye doc today to try to get an objective measure done of any improvements. As I have had three schimmer tests done in the past all below five in both eyes I had something to go by. Although schimmer tests are unreliable its better than nothing. If you check my last post I felt there was some difference since taking the restasis but not a huge difference. Well it turns out my schimmer had gone up from 3 to 12 in left eye and 4 to 6 in right. Interstingly the last time I had lower plugs inserted my schimmer went up from 3 to 10 in the left and 4 to 5 in right. My right eye seems to be more stubborn than the left, is this common? He mentioned that Restasis is unlikely to get approved now in Europe as there was problems demonstating its effectiveness over the vehicle. He was involved in clinical trials for it in Europe. He did mention that one possible side effect not yet witnessed could be tumours on the eye because of the anti-immune action of the drug but obviously this hasnt happened to anyone yet so it might not be a problem.

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    Case In Point

    One of the patients had LASIK in May 2003. I first saw him in January 2004. Upper and lower plugs were inserted in late January 2004, and Restasis was started at the same time.

    Two weeks ago I had to remove the lower plugs because of epiphora. Tears were running down his cheeks. I just saw him this afternoon, and his contacts were still floating on a nice robust tear film, after more than 18 months of Restasis twice a day.

    DrG

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    Quote Originally Posted by markL
    funny that this discussion should take place today.. I have had aqueous deficient dry eye for 6 years now, although one specialist (dr Gilbard of theratears fame) i went to see thought it was MGD. I have been taking restasis religiously for eight months now and nothing else. I went to see my eye doc today to try to get an objective measure done of any improvements. As I have had three schimmer tests done in the past all below five in both eyes I had something to go by. Although schimmer tests are unreliable its better than nothing. If you check my last post I felt there was some difference since taking the restasis but not a huge difference. Well it turns out my schimmer had gone up from 3 to 12 in left eye and 4 to 6 in right. Interstingly the last time I had lower plugs inserted my schimmer went up from 3 to 10 in the left and 4 to 5 in right. My right eye seems to be more stubborn than the left, is this common? He mentioned that Restasis is unlikely to get approved now in Europe as there was problems demonstating its effectiveness over the vehicle. He was involved in clinical trials for it in Europe. He did mention that one possible side effect not yet witnessed could be tumours on the eye because of the anti-immune action of the drug but obviously this hasnt happened to anyone yet so it might not be a problem.
    Interesting news. I had thought that it had to show a statistically significant effect that was greater than the placebo in order to be approved by the FDA.

    With respect to tumor formation, that is also interesting. But, I would expect to see an increased incidence of eye infections first.

    To answer your question, it is definitely not unusual to have different values between the two eyes.

    DrG

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    This "conversation" is really interesting to me, because I just had my own little test with Restasis.
    I was put on Restasis back in February when things were really, really bad following my lasik surgery last November. Of course at the time I was also taking and using anything I could get my hands on try to stop the pain and the dryness. As we all know it's difficult to tell what works and what doesn't when we are trying everything! Well, interestingly enough, I was taken off Restasis in June when one of my eyes started bleeding. Since then I've been on a number of new things including steroids, contacts as bandages, etc..etc.. NOTHING was giving me relief and yes, I was one of the patients Dr. G described as being anxiety-ridden, depressed and what ever else he said. I was barely getting out of bed things had gotten so bad.
    Well, my eye doctor put me back on Restasis about a month ago and I swear my eyes are a million times more comfortable than they have been in quite a while. I don't know if it's psychosomatic or what, but I think the drops really work for me. I'm one of the lucky ones and they don't burn my eyes at all. As for how long it takes for them to work, Dr. Sall tells me it usually takes 3 months for the eye chemistry to change, but I do feel a change already. As for how long I'll take it...hey, if this is the answer to my horrible eye days I will GLADLY take it forever!
    Just a note to those who can't afford it...I have no health insurance either, but I have found my eye doctor, and even other eye doctors that I have spoken to, have no problem giving sample boxes out to their patients for as long as they are able to. I know those doctors are constantly getting samples from their suppliers so it doesn't cost them anything. It's worth checking into.
    Honestly, with everything I have been on for the past 9 months, I think Restasis has provided me with the most relief.

  14. #14
    I know lots of people say horrible things about Restasis side effects, but I am one of the very blessed people that usually doesn't experience horrible burning from it. Along w/ what some of the others are saying- I can't stress enough how much Restasis has helped me, and I DEFINATELY garentee it to anyone able to take it. I still have horrible dry eye, but Restasis has made it so that I can live as normal of a life as possible. I had to go one day w/out it this summer, and it was a very long, painful day. Restasis HAS increased my tear production (my eyes have less dry spots from the bengal staining) and has decreased a little bit of my symptoms over time. It doesn't completely cure you, but it does help. Honestly, if it weren't for Restasis (and cauterization) I don't think I would be able to be going to a university right now. I'm pretty sure I would have to be staying at home going to a community college, because of the horrible pain dry eye caused me before I had any treatment. I'm not saying I'm not still in pain, because I do still have lots of really bad days, but I'm just pretty sure that w/out taking Restasis I would have many many more bad days and just wouldn't be able to function.
    -Amy

  15. #15
    Hi - I also am experiencing horrible dry eye due to lasik surgery. I am trying everything possible to help the situation and Restasis is one of those things. I have been on it about 7 weeks (I am 2 months and one week out of surgery.) So far I haven't really noticed any improvement with the Restasis but when I went to my doctor today he decided to give me an anti-inflammatory to use 15 minutes before I put the Restasis in each time. He said that this may activate the Restasis and cause it to start working more quickly (If it is going to work for me at all??) Have any of you heard of doing this? I'm going to use it for a week and then go back for a check-up. I'll let you know how it goes.

    Also, I wanted to know if any of you might know if Birth Control pills can affect dry eyes. I was on them before my surgery and I'm on them now. I would be willing to stop if it might help, but I don't see how it could make a big difference. I'm using Orto Tri-Cyclen Lo.

    Thanks for any help!
    Missy

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    Hello, Missy.

    I see that you are awaiting a reply.

    Acular, or any NSAID, will not improve the effectiveness of the Restasis. Acular is supposed to relieve the "stinging and burning" of the Restasis.

    If you have any additional questions, don't hesitate to email me.

    DrG

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    An Important Caveat

    Restasis helps with the inflammatory side of the equation. If, in time, it produces more tears, we still don't know about the quality and composition of those new tears.

    It is still important to continue using artificial tears to promote the healing of the corneal surface. Dakrina promotes the healing of the corneal surface.

    I would suggest using Restasis twice daily, and Dakrina in between.

    DrG
    Last edited by DrG; 15-Sep-2005 at 06:43. Reason: clarification

  18. #18
    welcome back, Dr G.

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    Quote Originally Posted by homes
    welcome back, Dr G.
    Thank-you, sir.

    DrG

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    Restasis

    I am one of the fortunate patients who has done well with Restasis. I have not had Lasik surgery, I recently had cataract surgery.
    I found some burning with Restasis but nothing I couldn't tolerate. I have Lupus and deal with much pain and perhaps I've just built up a tolerace to pain. But truly, I am thankful for Restasis and want to continue on it. No, it isn't a cure, I still have to use other lubricating drops, but I am sure better than I used to be.

    Happy user, Marilyn

  21. #21
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    I've been using the Restasis about four months and my eyes feel SO MUCH BETTER! At first, the drops did burn and sting a little for a few days but that subsided and stopped. I use over-the-counter drops so much less frequent now. I am really pleased thus far.

  22. #22

    so far so good with Restasis

    I, too, had cataract surgery resulting in dry eye. I am three weeks on Restasis and my Schimmer test went from "cannot calculate" to three. I look with anticipation to over five. So far so good--no significant burning. I am down to Genteal in the morning before really waking up and systane in the late afternoon. However, I understand that every good day is just that. I am waiting until my eyes are more stable to have the surgery on the other eye.

  23. #23
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    "So far so good." -Fernellen.
    Me, too. Three Weeks and counting. This is my second try with Restasis--the first time was for 3 months and the drops burned EVERY DAY. It was a disaster. This time, my eyes don't burn and I feel like they are moister. I think my eyes were too raw when I tried Restasis before, but since I've been using Genteal Gel at night, and have quit using saline solution (for eyedrops), I'm much better.

    My Schirmer score was 2 mm before (last July), and I can hardly wait to test again to see if there is measurable improvement. But even if it isn't, my eyes definitely feel better than last year---Self Care and Education and Dry Eye Talk.

    C66

  24. #24
    Quote Originally Posted by Rebecca Petris
    I've heard of this happening, in fact I think it's been mentioned here on the BB. Which interests me, not least because the Restasis website says that increased tear production was NOT seen in patients using punctal plugs (see this link).
    Sorry, I know this is an old thread but when I read this on the website I interpreted it a different way.

    'Increased tear production was not seen in patients using topical anti-inflammatories (steroids) or those using punctal plugs'

    Allergan make a big point of the fact that restasis is the only available treatment on the market that can actually increase tear production. Meaning that steroids and punctal plugs may help symptoms but CANNOT increase tear production.

    I didnt take it as 'its not effective if you have plugs in' etc.

  25. #25
    Quote Originally Posted by ken maller
    restasis really burns and is really uncomfortable but at the end its worth it. i took it twice for three months each time and my eyes are better
    I just started using restasis, one week after I had lower punctual plugs inserted and one week after I started on lotemax.

    First drop feels great - took out the inflamation, no stinging. We will see how it goes. One thing that I wonder: do I have to use this medication all my life? Or will this be a permanent cure?

    Thx

    Deniz

  26. #26
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    My eye doc told me if it worked, I would use it for the rest of my life. Either the package insert or the website, I can't remember which, says that symptoms will return after Restasis is discontinued. I noticed a difference about 10 days after I stopped using it.
    Every day with DES is like a box of chocolates...You never know what you're going to get.

  27. #27

    stopping restasis

    Hmm.. That's not good. So restasis is a temporary fix - though a very relieving one.

    I wonder about its side effects after extended use. Any ideas?

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