Sjogren's Syndrome Support Group

What's your experience with using Restasis?

Went in to the Ophthalmologist and the bad eye problem I had is cleared up. I'm so grateful to have found this doctor to help me. She put me on Restasis to help with the dryness. It's more expensive then I realized but I need help and am willing to spend the money to make my eyes feel better. She said it would irritate my eyes at first and it takes about 2 months to have a clear affect then up to a year to get the full results. I'm stuck wearing sunglasses unfortunately because there's not much she can do to help me with that but maybe in time with the Restasis it will get better.

IT BURNED I STOPED......no additives no perserves eye drops at walmart for 97 cents

Thank you for the reply Dreamers.

I have been using eye drops for years Systane, Refresh, Genteel etc all without preservatives but it doesn't seem to be enough so that's why I'm going to 'try' the Restasis. The eye doc said it will burn at first but if it hurts too much I won't continue with it. She didn't push it on me, I asked. Might be a mistake on my part but I guess I'll know soon enough. Right now I'm trying to get this dryness I have a bit better before trying it cause I think it would burn even more. So tons of drops for now. Plus I have another wonderful migraine and giving myself more pain is not in my plan

It really sucks to have pain in our eyes, Sjogren's is terrible and I wish I could remove it from my body.

I use restasis also the only time it burns if i have forgot to use it for a few days otherwise i think it works very well. kellylynn

Thanks Kellylyn for replying. If the Restasis works out it's good to know I can get away with missing drops here and there and still work as the stuff is spendy even with Medicare part D coverage. The eye doc gave me some good coupons but I can't use them because I have Medicare and I didn't realize this till I got to the pharmacy and they pointed out what the small print said. So if anyone wants them just PM me.

The doc also said I would be able to get 6 drops out of each packet if I sit it up in a small cup and use by the next morning.

When my eyes get really bad I use warm wash cloth at night sometimes through out the day. It helps with hydrating skin tissue too so I get the benefit of not having dark circles under my eyes. I have yet to find a natural remedy to help with dry eye.

Dreamers I was using a nylon filled with white rice to put over my eyes 2x a day to bring out the oils but I stopped when I found out I had a bacterial infection and didn't want to re-contaminate my eyes as it was only in the left. After that cleared up she treated me for the episcleritis and I was waiting for that to clear up before I made myself a new rice pack. Thanks for reminding me about it!

I have been on Restasis since November 2010...at first it burned but it actually felt good ..(if that makes sense) My eyes were so dry that the first time it burned they almost felt refreshed. When I first started on the Restasis I had to use supplemental OTC Systane drops....now I very rarely use my OTC drops. My eye doctor said that it takes a few months for the Restasis to kick in and not give up on it because of the burn...I am glad I didn't! My eyes feel soooo much better now!

Thanks for the reply Diane54.

I've not yet tried the restasis as it says it did not work well for the ones who had tear duct plugs as I do.

I contacted the company and they only repeated what their studies have shown. So guess it may or may not work for me.

Anyone out there using resttsis with plugs?

I tried the Restasis for 6 days and each day was worse then the day before so I quit. The left eye that had the episcleritis was acting up again so I don't think Restasis is for me.

So I will use tons of drops and wear wrap around glasses in the wind etc.