Restasis.. Ten Months On

[markL]

In a previous post I said that after 8 months of using Restasis I thought it had had some effect. My eyes werent nearly as inflammed at night and I seemed to be producing more tears. I wasnt wowed by the effect but I certainly was at least willing to keep taking it. I went to see my eye doc who performed a schimmer test as he has done in the past and my left eye had gone up from 4 to 15 and my right eye from 3 to 6. My right eye was always the stubborn one and responded in similar fashion to plugs lagging well behind my left in the schimmer test post plugging.

Well after nine months, only another month on it, the results have just kept on coming. My right eye has miraculously started to catch up the left and both eyes are now hugely improved. The point of this post is that after six months I was really down about restasis it didn't seem to be helping at all, after 8 months i still wasnt totally convinced and now after 9/10 months the results are amazing . I was able to go out twice in the last week with people smoking all round me for hours and i enjoyed my evening. I would have normally lasted about 2 minutes in that kind of env. DR G said that two of his patients started to get great results at 18 months out. So for those taking Restasis or considering it remember that the 6 months quoted by the company is only the timescale they used during the clinical trials and hence they can only quote this in advertising. Also regarding the stinging issue, it did used to burn when i put it in for up to an hour, but it doesent anymore.

[jcorbett]

Restasis

That's great news. Glad to hear you are feeling better. This is really interesting. Please keep posting. I'd be interested in hearing how you are doing over the next couple years....if Restasis keeps working for you.
Thanks to the flurry of positive posts on Restasis, I started it again about 6 weeks ago. I do believe I can tell a difference already. I'll be weighing in with my own post after I give it a bit more time.
Thanks for the update.

[Lucy]

Geez....I just quit after 7 months..........

[jcorbett]

Lucy

Maybe you can hurry up and get back on it and not lose the effects of those 7 months???

[Kyle]

I too started Restasis and then stopped when my eye started bleeding. I was off of it for a couple of months and never really thought it was working anyway. You know what we all say about being on so many things at one time we never really know what's working and what's not...well.....
those couple of months that I was off of Restasis were horrible (and still I never put 2 and 2 together). I have now been back on it again for about 3 months and it is amazing how much better my eyes are (knock on wood!) Right now I have slowly weened myself off of everything except Flax Seed and Restasis and my eyes are bearable. Some days I even feel quite "normal" and God knows, I NEVER thought I'd be able to even get through the day with the way my eyes were before. I am so thankful for Restasis!
(How's that for a Restasis commercial!!!!)

[Missy]

Wow Kyle! That's wonderful! I am so happy to hear that the Restasis is working for you. It really gives me a lot of hope!! Please keep us updated on your progress. My eye problems sound so similar to yours that I am really interested in the things that work for you, hopefully they'll help me too! I'm know almost four months out of surgery, I think that the Restasis has started to work a little bit for me. After I put it in my eyes water a little bit. They also sometimes sting or burn a tiny bit which may be causing the watering? I'm willing to stick with it b/c this isn't really too bad.

Missy

[jcorbett]

Yeah, Kyle, you really should have got that commerical. You wouldn't even have been acting!
Are you still using drops, or don't you even need those?
I am REALLY glad to hear you are doing better. You had me worried for a while there!

[Kyle]

Thanks for caring Jenny. I have to say the support system on this website definitely helped me get through the worst of days!
As for eye drops I hardly ever use them anymore..unless I'm really tired or I've been on the set for a 15 hour day (a typical length of a shoot). Then I resort back to hot washcloths, GenTeal drops and plenty of water.
Missy, I never had any burning or stinging with Restasis. I guess I was one of the lucky ones. I do know that is was a gradual improvement for me though. It's not like I went to bed one night and woke up the next morning and things were way better. It was really just little by little.
Two things that people told me on this site helped too. I think it was Diana that told me to keep a journal and write down when I was having good days and when I was having bad. She told me to document what I ate those days, what I did those days, what medicines I took, what drops, etc..etc.. You kind of can see a pattern and it helps determine what's working and what's not. I haven't written in my journal in a while and I picked it up the other day. I started reading some of my entries and the pain was just leaping off the pages. It brought back how horrible those first couple of months were. They were unbearable! Trust me, I DO know what you are going through and please hang in there...things really will (honestly) get better for you.
The other person that helped was Erik. He explained that when you go through something like this your body starts to adjust to the pain and gradually starts to accept it and make things more bearable (I don't know Erik, maybe you can explain it better). It wasn't this simplistic, but you get the idea. I didn't really believe him at first, but, you know, I think the body, and the brain, is remarkable now. I know I've endured things and gotten through things that I never, ever thought I could have before. If you had asked me 10 months ago (wow, it's hard to believe it's been 10 months!) if I would have still been sitting here today...my answer would have been "no". Those first couple of months just downright sucked!!
Missy, just dig deep and you'll find the strength to get through it. I go to church every Sunday and I thank God every single day that I found the strength (and this website) to get through those dark days. You'll get through them too...I promise. Just hang in there, okay?

[Dotanne]

Kyle, I am so glad that your eyes are much better. You have given me hope that we can have eyes that feel normal again. I will always remember one of your replies - "hang in there - We're all praying for you" - when I was feeling really down, last July. It was so great to get that support. It is great having this web site to visit. I started treatment with cyclosporin ointment (same ingredient as in Restasis) last week and it is very comfortable in my eyes. I put it in last thing at night as it is thick. It comes in a syringe. My eyes did feel better in the weekend, but I didn't go near a computer and wore my close fitting dark glassses most of the time. However I managed an outing at night with only needing drops once while at the function! I have also found that I get extended comfort in the evening if I put Dwelle in (it tends to 'grab' my eyes) and then have a shower and then my eyes feel great for much longer than usual. The steam takes that uncomfortable grabby feeling away and has made going out in the evening much better. I also have some goggles (Adidas sport ones) that are good for watching TV and other activities that don't need close vision. They have a very light tint in the top half.
I am not using the steroid drops any more. They have had some success with this cyclosporin ointment here. The pharmacist that makes it up was very encouraging and helpful. I feel that I am having more good days now, though the weather has warmed up and we have had some great humid days!!! It is just over one year since my Lasik disaster so it is great to hear more positive results from some of you.
My depression is much better - I do think one gets more used to having yucky eyes and I also work at keeping positive and doing lots of exercise.
So I will say(as Kyle did) to those of you that are having bad times - HANG IN THERE - I'm praying for you all too!! Thanks Kyle, and others for your encouraging thoughts and prayers. God bless you all.

[Delilah]

Going on Restasis

Hi Everyone, I wanted to say congrats to Kyle about his eyes and using restasis, I am going on it soon. Hopefully it will help me too and get rid of these stupid horrible strings of mucus in my eyes. I am almost out of my Alomide and I noticed it started to help cut down the strings in my eyes but not good enough so I am switching to Restasis. Anyway its great to hear when someone finds relief from their eye problem. I only wish we all could find relief lol, but its great news to hear Have a wonderful weekend. Delilah

[calli66]

More Myopic w/ Restasis?

I tried R for 2 months. First month-excruciating burning, but that subsided in the second month. I stopped mainly because my vision got noticebly worse. I just spent over a $1000 on 2 pairs of new glasses last year, and my vision got at least -.50 D worse. I would need to get new glasses again or give up driving at night if I stayed with Restasis. I also had eyelid swelling, tons of mucous, etc. Two weeks after I stopped R, my vision bounced back to where it was before.

Thanks,

C.

[Kyle]

Calli66, wow, I've never heard of vision going down from using Restasis. Is that common? Has anyone else ever heard of that?
Delilah, just an FYI too....I'm actually a girl. I know "Kyle" is usually a guys name, but my Mom was ahead of the trend way back when. No harm done, just thought I'd let you kow.
As far as Restasis helping with the stringy gross stuff in your eyes. It didn't help me with that at all. I wake up every morning with puss in my eyes. I carry Q-tips with me everywhere I go because I always have that stuff in my eyes. Sometimes it's worse, sometimes better. There's really no rhyme or reason to it.

[jcorbett]

Kyle's a girl

I remember way back when Kyle starting posting. I, too, thought she was a boy. My sons have two buddies named Kyle, and I have never heard of it being a girl's name. (I do like it as a girl's name, though).
Anyway.....one day we had a post on eye make-up & mascara. Kyle weighed in with her make up routine. It still didn't dawn on me that THIS Kyle was a girl. I remember thinking, "Oh well. I guess times really have changed."
Duhhhhh

[Peggy]

Great

Kyle,
I am so happy you are doing much better... You are really working up to 15 hours a day thats incredible. After I had the 1st irrigation on my eye in July ,I gave up on the restasis because it burned so much. Such a dilemma to decide whether to try it again or not I was previously on it for almost 4 months. Right now I am am using the genteal gel and cold compresses sometimes I feel like even the gel doesnt stop the burning or aching. Miss my water arobics (spelling) but terrified of the chemicals I even tried it with goggles. I am trying to hang in there but you can see how my week went on another posting. Congrats and look forward to more positive postings from you.. Peggy
I knew you were chic and with a lot of spunk too!!!!!

[calli66]

Vision and Restasis

I really don't know if other people experience acuity problems when on Restasis. That's why I posted--to see if there are other people with that side effect. I think all the inflammation it created in my eyes somehow worsened my vision. I think my eyeball or cornea swelled up or something--it felt very congested. My 2 months on Restasis was like torture.

C.