Restasis Setback

[Max52]

I've been using it successfully for about 2 years. About 3 months ago it stopped working. Has anyone else experienced this?...thanks

[PotatoCakes]

I don't know that it works for me anymore. It did once upon a time, 10 years ago or so, but my eyes have gotten worse. I continue to use it though because if it gives me any relief, even if it's imperceptible to me, then I don't want to risk losing that.

[Max52]

Thanks for the reply. What, if anything, gives you relief now?

[Faith1989]

Have either of you tried increasing the dose to 3-4 times a day?

[Max52]

Hi Faith..I've been on 3 times a day from the beginning.

[Mawsky]

I'm so happy to hear that some people can tolerate Restasis at all, I tried it 3 times, and had to quit because of the burning, that lasted and was not as they discribed "temporary". I wonder if like most drugs after some time they can lose their effectiveness? but I would think that a lot of people would be mentioning that it stops working. This is totally unrelated, but I had used minoxodil for hairloss for several years and it just stopped working, I have since found out that about 5 years is the lifespan of it working. So although it is a totally different drug for a different purpose, it was not information that was put out there for everyone to know. It would have made no difference for me, as I would have tried it anyways, but it is nice to know these things. I do hope that your trouble right now with Restasis seeming to not be working anymore, is just a temporary set back for you, or just a bad spell right now with your eyes.

[PotatoCakes]

Mawsky - Have you tried getting compounded "Restasis"? For a period, the regular stuff was burning so much that I switched to Leiter's and it really helped.

Max52 - Nothing really gives me relief; it's more about managing symptoms. I continue to use Restasis and I also use Serum Drops. The serum drops give me temporary relief but I still have tough days. I also have scleral lenses so that I can ski, etc but they aren't terribly comfortable so I only use them when I really need them. Sometimes in the winter, I use them for day to day things because the air can be so dry but they aren't a perfect solution for me, just one of a few things I do to live life with a chronic health issue instead of let it take over my life.

[glimmer-of-hope]

Dear PotatoCakes,

Can I ask how long you’ve been using serum drops, how many times per day and if you think the serum drops help you more than regular eye drops?

Thanks a lot and have a good weekend!

[PotatoCakes]

glimmer-of-hope - I've been using serum drops for a couple of years now. I try to use them at least 6 times per day although there are days I use them more and days I use them less. My original doctor said to use them as often as needed, at least once an hour. They definitely help me more than regular drops, both in terms of comfort and reversing abrasions. They do not help you make your own tears but if you have abrasions due to dryness, they can help a lot.

[Mawsky]

Potatocakes,
Thank you for the information about trying the compounded Restasis, I'm so ignorant about compounding Pharmacies and how you even go about getting something from them. I'm not sure if I ask a Dr. about it and he takes care of it, or I have to know all the ins and outs myself? Sorry to sound so uninformed, but I hear people suggesting it all the time, and just wouldn't even know where to start. I'm sorry to hear of your struggles, this is such a difficult thing to have, and hard for others to understand, they just have not idea, even working in a hospital they don't get how bad it really is, when I tell them I don't produce tears they are surprised, and even more so when they know I can't cry a tear to save my life. Do you feel that you are producing more tears with the Restasis? Are you able to cry tears? I would give just about anything to know that I may be able to do that again one day.
Christine

[Gerri55455]

Hello all, please update regarding your serum experience. I don't believe mine are 100% serum (folks at the pharmacy could not give me that information when I asked.) But I began using a week ago to help with burning and stinging from steroids. I guess I expected a bigger 'miracle' as my eyes feel even drier and sting quite a bit. Still, I have 3 months worth of serum: I was advised to use each vial for two days. Since I can't even work due to the dry eyes, I'm just sitting at home using the serum and waiting for a miracle. Is it at all possible for the eyes to feel worse before they feel better? I'm thinking of getting something else to use along. Currently, I only used Refresh Celluvisiv or SOOTHE Lubricant Eye Drops, Preservative Free by Bausch and Lomb. Before steroids messed up my eyes, these dropts were sufficient. Now I need something more. Thanks. ~Gerri