Restasis Issues, Need Encouragement to keep me going!

[Faith1989]

Hi Everyone,
So, I started Restasis about a month ago and am having some serious problems. When I started I didn't really feel much side effects, but the last week my eyes have felt 10x worse than they were before I started, also my eye lashes seem to be falling out. I know I should probably keep going with it, but I'm wondering if its even worth it?

Has anyone experienced bad side effects with Restasis, but eventually got better? Should I stay on them??

[LisaLis]

Hi Faith, I wouldn't use it. That stuff burned the heck out of my eyes. I tried using it twice and I couldn't do it. My eyes bothered me too much. If its that painful I wouldn't use it. This is just my opinion.

[dave25]

If it burns that bad I would also stop using it and call your doctor. You might be allergic to it.

[Faith1989]

hey guys ,

thanks for the replys. what bugs me most is that my lashes keep coming out and they never did before..i read other girls on here have had their issues with that and restasis to. i just feel like this is my only long term alternative (steriods worked great for me, my eyes felt and looked completely normal) i know a lot of people cant use restasis because of its side effects. I called allergan with my issues of my lashes falling out, they told me that this shouldnt happen and to stop using it. my doctor wants to keep me on it and told me to give it more time... i see him in about two weeks. i'm going to tell him i'm stopping and may try a diluted steroid again (a.k.a alrex and lotemax)

[Hopeful2]

Hi there Faith,

I have been on Restasis about a month. Since I first read about eyelashes falling out, I have noticed the loss of a few lashes. I'm not sure if it is more than usual, or if I am just noticing it more.

I am noticing more oiliness around my lashes as well, so I am trying to be extra careful with keeping the eye area clean. Are you taking any other drops? i wonder if it is the mixture of Restasis and something else? Do you have plugs as well?

Keep us posted!

[PotatoCakes]

Burning seems to be a common side effect; lash loss seems a lot more rare. I would stop for now. I don't know anything about the lash loss (if you stop, see if the lash loss stops as well; if not, it could be caused by something else) but many people feel burning because of issues with the carrier, castor oil. You might talk to your doctor about getting compounded Restasis to see if that will cause fewer problems. I get mine through Leiter's in California (they ship it to me), I'm not sure if any other pharmacies can do the compounding but it's worth looking into if your doctor really wants you to stay on it. If the compounded stuff causes you the same problems, you may be sensitive to the cyclosporine.

[Rebecca Petris]

I'd get off it too. But just a tip, call your doctor's office, tell them you're stopping it and why, and ask them to put it in your chart so your dr. will see it at your next visit. These little extra steps are helpful for maintaining a good relationship (as opposed to getting labeled a noncompliant patient...)

[Mawsky]

Hi, I agree with Rebecca about letting them know, and don't feel bullied into staying on something that is causing that big of issues. I tried it twice, quit the first time after sticking it out almost 6 months, just couldn't take the burning, and saw no improvement at all, decided to give it a try again but only used it a few times, and knew it wasn't for me. Yikes about the eyelashes, I have Alopecia Areata, and have no eyebrows but still hanging on to lashes, thank goodness that I never lost mine durning my time on them, I'm so thankful for my lashes now even more. Hope things get better, and surely if something is working for you (steroids) they should contiue with them. Good luck with all this.

[mgshutterbug]

Lashes falling out - restasis?

Hi Faith, during the maybe 3 weeks (I think really more like two) that I used Restasis, I noticed that my eyelashes had fallen out on almost half of my upper eyelid, and that the remaining ones were very thin. I stopped using them right away. My ophthalmologist had not previously heard that as a side-effect, but agreed with me that stopping them was prudent. She did say that many other conditions of the eye can cause lashes to fall out and thin, but that stopping was a reasonable choice.

[Faith1989]

Thanks everyone! I will stop and call the office tomorrow. My eyes were starting to look normal again before I started this craziness. The burning is pretty constant. I was just using Lotemax/Alrex once daily and my eyes were super white, and no lash loss! I wanna go back to this under doctor supervision. Tomorrow will be my first day off the Restasis so I hope my eyes dont freak out. A part of me wants to give it more time to see if it will all get better but its been almost six weeks now and things are getting worse..can't be a good sign. I've had improvements before so I do have hope for us all! We each need to keep trying everything until something works Again..i LOVE this site, and thanks Rebecca for it!!

[LindaLa]

Hi Faith: I was on Restasis for just over 7 months. I now have recurrent corneal erosions and saw a corneal specialist who put me on a different eye drop regimen. I stopped the Restasis and saw no change so I don't think it really helped me anyway. I have lost a lot of my lower eyelashes, but that was way before I started the Restasis. The doctor attributed it to blepharitis. I did read online that blepharitis can cause loss of lashes. I agree that you need to contact your eye doctor. When I was first put on restasis, my doctor told me to take it along with Lotemax. First the Lotemax, then wait 10 minutes, then use the Restasis. I was to do that for 1 month (he said it would help with the stinging). I have issues with some steroids, particularly Lotemax. After using it for a few days, my eyes get blurry. So I stopped the Lotemax and continued with the Restasis. I would really be interested to know how many people actually get relief from Restasis. From what I have read on this forum, it doesn't seem like a lot.

[DCRdryeye]

Corneal erosions from Restasis? Now I'm worried. I have Restasis compounded for me in Australia and it really burns a lot when applying it. I'm almost onto my fourth month of use and was told it can take up to six months to work? So I've been sticking it out. Funnily enough, I forget the Restasis in a motel room fridge yesterday and will be without supply for a few days. I ordered another bottle, but not so sure about that now. The decision to keep going with it needs to be weighed against the "benefit to risk ratio", and I've seen no benefits and more 'potential' risks.

[PotatoCakes]

LindaLa - It is my understanding that less than 15% of the dry eye market actually benefit from Restasis. I do wonder if that number is inflated though, as many of us continue to use it despite having little or no results. It is my understanding that it can take up to 6 months to work for some people. I'm on compounded Restasis and am not sure if it does any good or not but I'm afraid to stop taking it. At one time, regular Restasis did help me but that was nearly 20 years ago, I stopped using it and my dry eye has gotten a lot worse, so maybe if I'd stayed on it ???

[PotatoCakes]

Also, if it burns very badly, I would discontinue use (my opinion). Sometimes burning / pain can indicate a problem, like causing damage. I'd try it putting Refresh or other wetting drops in, wait 10 minutes and then apply the Restasis. If it still burns, that may mean something more than just reacting to a dry eye is going on.

[LindaLa]

Dear DCRdryeye, I am nOt saying the restasis caused the corneal erosions. It has just been a progressive disorder for me. I was diagnosed with map dot fingerprint dystrophy. That along with the dry eye increases my chance of recurrent corneal erosions. I have been off the restasis for just over 2 weeks and have not noticed any difference. I gave it a shot for 7 plus months. I go back to the corneal specialist next week. She has asked for copies of my blood work to see if more tests are needed. I think we will try to work on the RCE's but she also wants to try to get to the underlying cause of the dry eye.