ANA Discussion Forum
Post-Treatment => Eye Issues => Topic started by: mk on September 06, 2011, 06:17:56 pm
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Has anyone used Restasis for dry eyes around here? I heard from a colleague today that it is used to treat severe dry eye due to autoimmune disorders (like Sjogrens syndrome). It is available by prescription. Obviously the cause for dry eyes is very different in our case, but I was wondering if anyone has ever heard about Restasis being used for patients with neurological deficits. I heard that it helps in tear production - my eye doesn't tear at all, so I thought that this could be interesting. I am planning to ask my doctor at my next visit, but in the meanwhile any ideas?
Marianna
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I have been using it for several months now. My opthomologist said that it was not really for my type problems, but I wanted to give it a shot. He said that it would take at least a month to notice a difference. No change. At least one person on the forum (lori67, I think) said it helped. If you try it, I recommend that you keep it in the fridge; it feels better when it is cool. My doctor said to put it in before I put in ointment. Some people have said that it should say in for 15 minutes before ointment is applied, but my doctor did not specify a time.
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I tried it - mostly at my request. It was a big pain in the rear trying to get it timed before my Refresh PM and my contact in my good eye AND i think it made my eyes MORE DRY...especially now that I am not doing it. In fact, I was a little incredulous when the Dr told me that I needed it in my good eye - I never even knew I had a problem. However, now I noticed EVERY morning when I get up!!
I'm sure everyone is different...
K ;D
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My optho put me on it 2xs a day. Along with artifical tears. (I'm not the greatest at using regular). Said it needs to be consistant in order to work. I DO think it helped some after using it cosistant after awhile.
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Someone at the 2009 ANA Symposium in Chicago said that one of the docs speaking mentioned that Restasis was a good option for eye issues.
I've never tried anything more than "heavy duty" eye drops, but my eye issues are very minor.
Jan
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Thank you for your answers. I did a quick keyword search and it seems that quite a few have tried it, with varied results. As always in the AN world, everyone is different. I guess it is worth trying, and what makes it more appealing is that it is available by prescription, so insurance would cover it. I will ask the ophthalmologist if he will prescribe it for me on my next visit.
Marianna
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Just know that even with a script, it can be VERY costly. I have GREAT insurance and don't usually pay much for scripts but with the coupon they gave me for the first time, it was still over $40...I want to say $80 after that...
K ;D
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I used it for a while and seemed to be having good results, but then I developed a bump on the inside of my eyelid (called a chelazion), which was something totally new and hurt like heck! It was a tiny little bump, but felt like I had a boulder in my eye. My doctor didn't think it was related to the Restasis so I kept using it. I went out of town and forgot to pack the Restasis so I went a few days without and oddly, the bump went away. Got back home, started using it again, the bump came back. So, I think it's safe to say, the Restasis was causing this bump. Stopped using it and explained that all to my doctor at my next appointment and she didn't believe me because that's "never happened". I said, well, we AN patients like to do things that the rest of the world never does. She wanted me to try it again to see what happened, but I really didn't feel like risking being in pain again. My eyes are not horribly dry and I find regular artificial tears provide enough relief if my AN eye does start to feel dry.
I do know of non-AN patients who have used Restasis with good results and I realize my reaction was odd and who knows, maybe it didn't cause the bump. I have decided to just leave well enough alone. I'd say give it a try and see if it helps. You never know!
Lori
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About 3 months after my surgery, I tried Restasis (like Kay, at my request) and used it every day for about 6 weeks. It did not help me at all, so gave it up. I still have the dry eye on the AN side and produce no tears, but a couple of drops daily of Refresh Celluvisc and some Refresh PM lube at night are all I need now. Restasis seems to be hit and miss, so it's worth a shot if your eye is very dry.
Patrick
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I also tried Restasis for my dry eye. I used it for 3-4 months but did not find that it helped so I stopped using it. Check with your insurance to see if it is covered. I had to get prior authorization- my doctor had to call insurance co. and explain why I needed it and then they gave the okay. Let us know if it helps.
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LORI,
Oh my, I actually developed a bump on my upper eyelid too and on & off it has been irritating. You can visually see it, but I feel it & know it's there. My doctor told me the 'bump' was actually one of the tissues oil glands that is swollen some and she said probably because the Restasis is helping. HMMMM, makes me wonder now. I think I may stop it for a bit and see if 'bump' goes away. Some of us just can't win! ;)
Denise (MI)
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Denise,
If it turns out that's what caused your bump, I'm going to bring you to my doctor for show and tell so I can say "SEE! I TOLD YOU!".
The only way I knew mine was there, aside from the constant irritation, was when I kinda lifted my eyelid up a bit and looked under there. There was clearly a white bump.
Lori
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I was also having an issue with my tear/oil glands being blocked when I was on Restasis. My doctor would manually open them by squeezing them to release the built up oil- it hurt!
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Denise,
If it turns out that's what caused your bump, I'm going to bring you to my doctor for show and tell so I can say "SEE! I TOLD YOU!".
The only way I knew mine was there, aside from the constant irritation, was when I kinda lifted my eyelid up a bit and looked under there. There was clearly a white bump.
Lori
OOPS, mine was supposed to say can'T visually see it
LORI, LOL, as long as you pay the travel fees I'm up for being used as show & tell! HAHA I too have tried to lift up my eyelid to see something. Even had hubby look, but seen nothing. I think I will have to try to look again. I have not been using my Restasis at all for about 4 days. My eyes DO feel drier because of it, but my 'lump' is still there. SO, since you did decide to continue to not use it, did it go away for good??? How do your eyes feel now? What all do you use?
Now the last post (?Lauren?) now OUCH, that sounds like it would hurt for sure!!!!
Sure seems ODD that 3 of us for sure have had some strange thing from the Restasis, and our doctors probably aren't sure what to think. I'm not due to go back for about 6 weeks. I'll have to say something FOR SURE about this topic!!
Denise
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I quit the Restasis & guess what? My 'lump' on my eye lid is gone!!! Not sure what to think now after reading these posts & quitting and having it be gone. Leads me to believe FOR SURE the Restatsis had something to do with it.
Now, wonder if I should start it up again & see if lump comes back before I see the dr. again. Do notice my eyes are drier, which is a bummer!
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I've been using restasis for a couple of years--twice a day in both eyes. Recently it seems to be irritating my right eye (dry eye post AN surgery)--it gets really red after putting the drop in. I quit using it a few days ago & seems to be better and haven't noticed a difference in dryness.
Has anyone else had that?
also, the eye doc said I have blepharitis (red, itchy lid) in that eye. I asked if it's due to the drops (celluvisc, restasis & ointment at night) but he said no. I find that hard to believe. I think I've got it under control now...daily washes with baby soap. I put a drop of soap on my finger with a little water & scrub away.
Don't buy the expensive lid cleanse pads recommended.
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I'm currently on W&W so have no issues with my eyes from surgery or CK but have had problems with dry eye for several years. I know nothing about restasis but my opthomologist recommended that I use OTC drops. I have been using an OTC liquid drops for dry eyes called GenTeal. This has been very helpful for me.
Karen
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I've been using restasis for a couple of years--twice a day in both eyes. Recently it seems to be irritating my right eye (dry eye post AN surgery)--it gets really red after putting the drop in. I quit using it a few days ago & seems to be better and haven't noticed a difference in dryness.
Has anyone else had that?
also, the eye doc said I have blepharitis (red, itchy lid) in that eye. I asked if it's due to the drops (celluvisc, restasis & ointment at night) but he said no. I find that hard to believe. I think I've got it under control now...daily washes with baby soap. I put a drop of soap on my finger with a little water & scrub away.
Don't buy the expensive lid cleanse pads recommended.
No I didn't have the problems like you listed, but I DID discontinue using it for the reasons posted on my previous posts on this thread/topic.
I do like the Genteal like the last post in the evening otherwise just use Systane Ultra Performance lubricating eye drops and prefer that over the Restasis anyways.