Restasis.. Ten Months On

[Kyle]

Hey Calli,
That is so interesting (and so scary) to read that about how the restasis is affecting your eyes. I know there are a couple of doctors that post on this site and I would be very, very interested to hear from them regarding your experience. I wonder if this is more common than we know? I don't think Restasis has been around that long so I wonder if anyone really knows what the long-term effects are from it.
I do know how that horrible eye swelling feeling feels though. I remember, in the couple of months right after my surgery, my eyeball itself (the inside of the eye, not the outside) would swell and swell and I felt like sometimes it would just pop out of its socket. It was so gross! It reminded me of that Disney movie (I think it was Monsters, Inc) where that one monster just walked around with one big eye. I felt like I looked just like him. My eye swelling went away on its own, but no one ever explained to me why it happened in the first place!
I hope your eyes settle down soon. I really do.
Take care,
Kyle

[kaypeeoh]

Restasis is cyclosporine, an old drug once used for preventing transplant rejection. More than 20 years ago veterinarians were dissolving the tablets in vegetable oil to make eyedrops. It is still made that way by custom pharmacies. Animals don't live as long as humans do so there's no way of knowing what problems might occur after 30 years on cyclosporine. But in animals that needed the drops for a lifetime, the drops did not cause worsening eye problems.

I tried Restasis for six months. The product only comes in single-use vials. But at $90 for 30 vials, it's too expensive to throw out the vials after one treatment when they still have 8 or 10 drops in them.

My problem is a low tear break up time, making contact wear a problem. The drops brought my TBUT from 2 seconds to 10 seconds. That's still not enough to make contacts tolerable so now I'm using NAC, flax seed and Dakrina samples.

If someone can't afford Restasis, the same drug is available for animals. I think restasis is 0.02%. The veterinary version is 0.2% and costs about $10 for a three-month supply. Being much stronger, it stings a bit more than Restasis when first administered.

[rkralman]

So other people have had this sensation too?

I started on Restasis for the second time last week and since then have had this strange feeling that the eye is heavy, with a very full congested feeling. Feels like it is bulging but it is not. Very achy and somewhat teary. Only one eye feels this way though. Very strange. Is this the sensation other people have felt in their eyes? did it stop when you stopped Restasis or has anyone felt this with any other drugs or drops? How long did it take to go away?

[Kyle]

Hi there,
I don't know if you read my posting above, but, yes, I did have that eye bulging, swelling feeling with my eye in the first couple of months after I had lasik. I remember I could feel when it started to swell and bulge and ache and I would just run to the mirror and look at it. It was unbelievable how big it would be! At that time my mental state was seriously affected as well so I would just grab hot washclothes (zapping them every couple of minutes in the microwave) and cover my eyes with them and go back to bed and cry. The warmth of the cloths would eventually help with the swelling.
I remember asking several eye docs about it at the time and they always looked at me like I was crazy. Of course, this was also when they all told me I was crazy for saying I was having any problems due to the lasik anyway!
Try the hot cloths if you haven't already. That, and really hot showers, still get me through the roughest times.

[rkralman]

Thanks for the reply, Kyle. I had read your post and felt very relieved to know that someone else has felt this weird sensation! It is the grossest feeling. I definitely feel like Cyclops some days. Thankfully, the bulging, heavy feeling does not seem to physically appear when I look at my eye (except for a glazy look in the eye), but it certainly feels this way all of the time. How long did it take to clear up for you? I will try hot compresses to- night and see what that may do. Thanks for the tip! Robin

[Amy09]

so do any of y'all think that there is no "ending point" for the effects restasis can have on your eyes? I have been using restasis (twice the recommended dosage a day) for about 13 months, and although restasis has helped my eyes a lot, i definately still experience a lot of eye pain and problems with my eyes. it is comforting to see that someone didn't get results till after what restasis has said (they say six months on the commercial.) It would be kind of diasppointing to know this is as good as my eyes will ever feel, but it would be SOOO comforting to know that restasis works better and better the longer you use it. Please reply!

[Kyle]

Amy, I honestly can't help you here. I had results pretty fast from Restasis (thankfully), but I think others have posted that it took them quite a while to get any benefits. Let's see what other people say and I would also definitely talk to your eye doc for his/her opinion.
Robin, as for my "bulging eye", it kind of stopped on its own (again, thankfully) after about 2-3 months. Hopefully yours will only be temporary as well.

[Jeff]

Hi Amy,

I have been using Restasis for almost 2 years now. It seemed to take a while for me to see any results with Restasis. I am generally a very fast healer. My body can heal from serious cuts, surgeries or punctures at a very rapid rate. I even survived battery acid in my one eye much to my surprise (this healed in less than a week). But when it came to my eye surgery it seemed to be slow comparatively speaking. The affects of Restasis I'd say did not kick in for probably an entire year. I have been using Bio-tears now for about 1 year. I believe it is helping also but I am not willing to quit anything I am on to find out. I started using Flaxseed oil again. I used to use it for much different reasons. I eat walnuts for the omega 3 oils as well as more fish (it can't hurt the eyes and is better for my diet). All things being equal I would say that I have noticed more improvements over the last 6 months. I am sure this site has helped my attitude also. Everyday I am more appreciative than 1 year ago. I really try to be more grateful for simple things in my life. I truly believe as time goes on I am becoming more accepting of my current situation. In doing so I feel its grip relaxing it's control over my life. What I've got, is what I've got.
Jeff

[Amy09]

thanks for the replies and let's just hope that things keep getting better for all of us. i definately agree with you, jeff. although it's still very frustrating to wake up each day and deal with the same treatment for dry eyes "all over again," i too believe I am much more accepting of this than i was a year ago, and this website really helps. Life isn't perfect. Things happen to everyone that are frustrating and not always explainable and bad situations come in all different forms. I guess were just all given a bad situation in the form of dry eyes!

[sazy123]

i agree

I agree life isnt perfect, i am quite new to dry eye i have been suffering tremendesley now for 8 months. However in my case i have not been able to accept it and it never gets any easier. two resons for this are: i am 20 years old. coz i know must people that suffer from dry eye are generally older. I really cant accept that that everything i ever wanted to do in my life, like living away at university, starting a family is all now compromised. Because there is so many things that i am yet to accomplish in life which is vertially impossible with eyes like this! Im finding it so hard to do all the reading that you have to do, concentrate in lectures, social life in smokey atmospheres etc etc. The other reason is that when you have got dry eye and live in the UK it is not an easy road. No doctors will listen to us on our free health service so i am spending hundereds of £££'s tring to get them to listen privately and even give me restasis coz none of them even know what it is! Im sorry if i worked in a proffesion like that i would still keep up to date. I am very depressed at the moment but anyway it does help to hear there are people with this that are coping well. Makes the future sound less dreadful, so thankyou for that . But i just wanted to point out that it is very hard to cope with this disease at 20 with no help from doctors!!

On a positive note tho i am seeing a doctor in london soon who can perscribe restasis!!

take care saraxxxxxxxxx

[untkicker29]

I completely understand where you are coming from. I am only 21 and have been dealing with dry eyes now for 10 months. My dry eyes are from the prescription drug accutane. It has been a struggle like you said to read and pay attention in lecture when all I think about is how crappy my eyes feel and how depressing it is that no one else I personally know has ever had dry eye problems. Hanging out with friends can sometimes be hard like you said as well because of the smoky environment in bars/clubs.
Have you tried punctal plugs?
What is the exact cause and severity of your dry eye?

[Amy09]

sazy123, i am only 18-years-old and have been suffering from severe dry eye since i was 14 that has progressed as i've gotten older. not just dealing w/ the pain, but the embaressing redness since before I was even in high school has been a feat to overcome, but trust me, you need to try and be stronger about the whole situation. i know it is SUPER hard to do normal things w/ dry eye when your just a young adult living the college life, but if you wallow in the problems and pain, it just makes the severity seem to exist more. my senior year i could no longer wear contacts or eye makeup, was having to miss tons of school due to surgery and was more depressed than I've ever been. I lost friends and I wouldn't let myself go out and do stuff because of how I felt and looked. There was even a possiblity of not being able to go of to a university and have to stay at home, going to a community college.

after try to dwell on the positive though, and forcing myself to go out and do stuff, I found that when your mind it occupied doing other things, you seem to not notice the pain as much. i AM at a universtiy, and it IS super hard to pay attention in class (i've even had to miss a few morning lectures cause it takes me a while to get ready after waking up in major pain) and living in a dorm (i have to sleep w/ goggles on because of the central air/heat). I go to a large university of about 50,000 and whenever I begin thinking that no one else my age must know what its like to experience chronic pain, and basically a disability, I'll see someone on campus in a wheelchair, or someone that is blind, and realize that, in fact, my life could be MUCH harder. My dorm is also by the university's health center, and they always have up ads for students w/ chronic muscle pain, autoimmune disorders, organ problems, cancer, aids, etc. so even though you may seem alone in experiencing all this pain, i guarentee you that there are other people your age w/ painful health problems.

Anyways, I'm so glad I've put myself back in the social scene since last year. go out and socialize even if your in pain, just learn to moderate yourself a little bit more than before dry eye syndrome and know that you may not be able to stay out till 3 or 4 in the morning or else you'll pay the price the next day. and yes, it may seem frutrating to know you may be limited as far as career and family goes, but keep remembering that researchers are working on more treatments for dry eye everyday. who knows what will exist 10 years, five years, or even a year from now for people w/ severe dry eye. in the mean time, try to live life to its fullest, no matter how bad the pain- just bring drops along.

I don't know your views, but I personally just try and look at it from the view that God has a reason and a plan for everything. thinking that your life is ruined from this is not the way to go. good luck w/ seeing a doctor about restasis, and I'm sry that seeing a doctor in the UK is so hard... but just try to get back in the normal routine of things as best as possible. i know it is VERY hard being young w/ severe dry eye, but it is no fun to stay in a depressed state of mind.

[sazy123]

Hi uni life

Hi

Thanks for your replies and amy09 thanks for your advice. I was unable to tolerate contacts about a year and ahalf ago and when i was in australia i had the occassional symptom with out contacts but nothing much more (one thing i managed to do before this thank god). 8 months ago i went on anti depressants only for 1 month. The biggest mistake ever! and it has triggered it to full blown dry eye. i would say its about moderate-severe. as in its constant all the time. They stared of dry then i developed bleparitis, i still dont know if my main problem is lacrimal gland problem or MGD. I have been to 3 professionals so far. One doctor i have been to said i didnt even have dry eye.

I do have gud days though when they arnt to bad at all. Dont know how long for! sorry to be pesimistic. I think i am a pesimist and a optimist at the same time. I have hope that something will come along and help me wether its restasis or something else. But i just hope its sooner rather than later! these years are supposed to be the best years of my life and i hate the thought of having to wait 10 years maybe for something to help me. I know that eventually i would of got dry eye but i think if i hadnt of taken the anti-depressants i could be normal for another 10 years maybe.

Maybe with time i will be able to cope abit better. Its just I find it hard to concentrate anyway on things naturally on work etc and this makes it so much harder. I have moved back home and have decided to commute to university because i cant cope with living there. I can cope going out drinking now and again alchole is quite good for the pain! but its tring to make really good friends and the work side that is the problem. I know it could be worse but I never see any people with disabilities at my university and i feel like im the only one, i dont think if i told anyone they would consider this as a problem.

So at the moment theres not much i can do about my depression but i have hope that things will get better.

Amy09: have you tried restasis, how did it work for you? did any thing trigger your eyes or was it a graduall thing it must have been horrible at that age.xx

take care saraxx

[Amy09]

yes sazy123, I have been on Restasis for 13 months and I can personally say that it is miracle what it has done for me. It has increased my tear production, and decreased burning, inflammation, and foreign body sensation after i put it in longer than any other drops I've tried. However, I can't speak for everyone, and know that a lot of people on dry eye zone have posted about how horrible their experience w/ Restasis was. I would still give it a try though.

as for what triggered my dry eye, I still don't really know. i've always had problems w/ my eyes ever since i was really little. my vision is 20/100 and I've been having to use warm compresses on my eyes every morning since I was 11 or 12. There's a possibility that I also might have sjogren's syndrome or hyperthyroidism, both which cause dry eye and run in my family (although no one in my family has every had eye problems as young as me). Wearing contacts, being mis-diagnosed for have just allergy eyes, taking perscription medicine that had a side effect of dryness, and puberty also could have had something to do with it. I don't think I'll ever know what caused my dry eye, it could have been one of these things, a combination of things, or none of these things at all.

I would suggest looking at some of the previous threads about people's experience with Restasis, but as I've already said, I definately think you should try it. I think it's probably the best thing I've done for my dry eye.

[sazy123]

restasis work for evaporative dry eye?

Hi has restasis worked for anyone on this site who has evaporative dry eye? I have read some things that it does, but wondered if anyone had any experiance of it working increasing TBUT etc.
I think ive got this over the quantative prob, but not entiely sure i mite have both.

xx