[Kimberly]

#1064477

ewmb – Interesting comments from your eye doc…I knew that Graves’ changed the "quality" of our tears, but I had never heard of a specific reason for this. Hopefully, you will hear from someone who has had some success with Restasis.

[ewmb]

#1018392

Been having weird things going on with eyes…… Dry eyes for 16 years- Graves since 2007- RAi May 2009 still not normal on levoxyl but getting closer. Went to eye doctor this morning. She says that my bifocal prescription hasn’t changed it’s the break up of the tear film on my eyes that is causing a lot of my problems right now. She’s given me a prescription for restatsis. She mentioned that the autoimmune disease can attack the cells in your eye that keep the tear film stable. Anyone else out there on Restatis? She told me it might take me up to three months to notice a change and that we can try it for 6-8 months and then go off of it. She also told me that my replacement levels of levoxyl having gone too high, I’m backing down now on dose, might have made things a little worse right now. Also suggested getting really good wrap around sunglasses to stop light getting in from the sides.

ewmb

[mtbikrchick]

#1064478

I’m a long time user of Restasis. I have been using it twice a day for at least 4 years now…maybe longer…time flies. I’ve had GD since 1993. I did RAI on March 1, 1994. I never had really severe eye symptoms other than some lid lag and sandy feelings. I started noticing pain in my eyes probably 6 or 7 years ago. For two years, I complained to several doctors and even saw an opthalmologist who has a lot of knowledge about GD, but was told repeatedly that I had seasonal allergies. I tried a couple of different allergy meds, but nothing seemed to help. So, I went to an allergist/immunologist who tested me for allergies. Lo and behold, I wasn’t allergic to anything, so I went to see another opthalmologist. He started down the allergy road again and I put the brakes on quick when I told him I had been recently tested by an allergist with no reactions. Viola! He started developing another theory and quickly settled on Graves Disease as the culprit. He did a the test where they put lithmus paper in your eye to see how much tear production you have. I had as close to zero as you can get without having ulcerations on the cornea!

At first I had to use OTC drops during the day between Restasis doses and I also used an ointment at night. It was slow progress, but I eventually noticed that I was having to use the OTC drops less and less then I finally was able to quit using the ointment at night. I have been using Restasis only for at least 3 years. I’ve heard many people talk about side effects and that it did not work for them, but I think I’ve had pretty good success with it. Regarding the side effects, one person I know developed night blindness and had to stop using it. Another lady had constant burning sensations in her eyes while using it. The only thing I’ve experienced is some short-lived burning sensations and some sensativity to really bright light right after I put it in my eyes. Those effects usually last 30 or 45 minutes tops. One tip that several docs have given me is to put your box of medicine in the refrigerator. It seems to help with the initial burning sensation. My eyes have now recovered enough that my opthalmologist told me that I can go see him every two years instead of annually. I have to consider that a success and I’m still not allergic to pollen etc. (thank goodness!).

Good luck!
Sheila

[ewmb]

#1064479

Thanks Shelia,
I had the same dye put in my eyes and it seemed to vanish immediately as if by magic. I don’t have the burning sensation right now. I’ve only been using it two days but it’s not that hard since I was using the artificial tears already. Glad to know that it might really help the pain and the focusing problems I’ve noticed recently.

ewmb

[genuinruby]

#1064480

I, too, got an OMG you have dry eyes after the litmus test. I have not tried RESTASIS, but I think I have tried nearly every brand of OTC these past 3 years. My new favorite, Systane Balance in the purple package. It was shocking to see that it is not a clear liqid as the drops fell to my eyes…but, my eyes feel so soothed now.

[snelsen]

#1064481

I have the same problem. Have been using all kinds of eye drops. So far, systane ultra the best. Will look for Systane balance. Sheila, thank you for your detailed responses @ REstasis. I know you said good results, but does that mean you have less tearing all the time? I know I have dry eyes, and I understand the dry eye/tearing conundrum. I am really plagued by the tearing, and have to blot my eyes super frequently, especially the first four hours of the day. I do use lubricant at night. I do have plugs, but I have not noticed a BIT of difference, except the very high bill I got for the 2 seconds it took to insert them. I can never decide for sure if my tearing was worse after the plugs.
I’d like to look at Restasis as the magic bullet. Have you tried to stop using it, and did the symptoms increase again?
Or have you ever taken a vacation from it?

I will have strabismus (eye muscle) surgery in September, and would LIKE to think that photophobia and tearing might be better after that surgery. But nobody has said/not said it would improve, I always forget to ask!
Shirley

[ewmb]

#1064482

Shirley,
If I remember correctly from what the directions on the restasis were you can’t use it if you have tear duct plugs. I guess those are removeable?

ewmb

[snelsen]

#1064483

I think you are right about that. I will explore the whole thing further. I had asked before @ rx eye drops, and the eye doc said, "there is one that is rx, but you don’t want that." Well, this is an eye doc I no longer go to, so I don’t want him, either! Thanks, ewmb

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