Super discouraged:(

[Mawsky]

OK, so I got the idea today to start back on the Restasis, I put one drop in each eye about two hrs. Ago, I guess I forgot or something, but I'm paying for it now, it is so weird they never burn at first, it takes about thirty minutes or so but the burn is horrible and lasts for hours. I decided to try again because I have so much swelling, my eye lids are puffy, and when I pull down my lower lids the inner tissue is all swollen, my husband keeps telling me that's all that's wrong, I'm so swollen that no tears can come out because the glands are swollen shut. This makes sense for sure so I thought that the Restasis made sense, as the whole purpose is to reduce the inflammation right? I'm so upset right now, my eyes have been bad for a long spell right now, sometimes I feel like I'm on the verge of losing it, but I can't break down and cry because that always makes it ten times worse, in fact that's what I think exacerbated my eyes this last time. I don't know what to do right now, I don't feel like this is ever going to go away, and I can't imagine living like this. I guess I'm just having a bad day. I don't know if I should suffer through using the Restasis or not at this point, my husband thinks I didn't use it long enough, I think I did it for about four or five months, with no real improvement?? I stopped because it seemed to be making them worse, with the burning for hours on end, I wish there was an easy answer.

[Margaret]

I'm so sorry to hear you are suffering. I've had a really bad week myself and it's hard to hold on to your sanity! I personally wouldn't go on with the Restasis myself. It just doesn't sound like it's working for you. You may even be allergic to some component of it. Have you ever tried autologous serum? Maybe your body would accept it better? I have a really hard time keeping myself calm when I have these hard weeks too, so I'm not one to hand out advice right now, but it does seem to get better for most people. At some point they find something that seems to work and hopefully you will find that too. How about moisture chambers? Hang in there please!
Margaret

[Mawsky]

Thank you so much Margaret, it really helped to read your reply, I'm sorry your going through this bad spell too, I have not tried the autologous drops, not sure where I would get them, or who I would ask about them, I'm due for an eye exam with my optometrist soon, he is very kind, I will ask him about them. How long have you had the dry eyes? I know lots of people have been dealing with this for years, I feel so selfish when I complain, I wish I could handle this better, but I do have better days. It helps to communicate with others on here. Thanks again for the encouraging words.

[nitrodrops]

OK, so I got the idea today to start back on the Restasis, I put one drop in each eye about two hrs. Ago, I guess I forgot or something, but I'm paying for it now, it is so weird they never burn at first, it takes about thirty minutes or so but the burn is horrible and lasts for hours. I decided to try again because I have so much swelling, my eye lids are puffy, and when I pull down my lower lids the inner tissue is all swollen, my husband keeps telling me that's all that's wrong, I'm so swollen that no tears can come out because the glands are swollen shut. This makes sense for sure so I thought that the Restasis made sense, as the whole purpose is to reduce the inflammation right? I'm so upset right now, my eyes have been bad for a long spell right now, sometimes I feel like I'm on the verge of losing it, but I can't break down and cry because that always makes it ten times worse, in fact that's what I think exacerbated my eyes this last time. I don't know what to do right now, I don't feel like this is ever going to go away, and I can't imagine living like this. I guess I'm just having a bad day. I don't know if I should suffer through using the Restasis or not at this point, my husband thinks I didn't use it long enough, I think I did it for about four or five months, with no real improvement?? I stopped because it seemed to be making them worse, with the burning for hours on end, I wish there was an easy answer.

Did u try going along with Systane Ultra 1st, 5mins later followed by Restasis.

With this combination, i find the burning/stinging is lesser. But again, best to ask a professional.

[Rebecca Petris]

(((((Mawsky)))))
(((((Margaret)))))

Bad week in Washington, huh. I am so sorry you're having such a hard time right now. Hugs and hang in there.

[MaryVa61]

So sorry that you're having such a bad week too! I know how alone and hopeless it can feel. Good thing we all have each other! I did learn a lot this week trying to research help for the big med allergy problem I've had this week, so I'm going to post it in a new thread for other eye drop allergy types, especially who have Glaucoma.

My tip for you, if you haven't considered it, is to call Leiter's Pharmacy and see if they can compound the Restasis for you either without the castor oil or if they know of another ingredient in it that a lot or people are sensitive to. I suspect I'm sensitive to the castor oil because I'm currently trying a new glaucoma med that is preservative-free, Travatan-Z, that I'm having a lot of stinging from and I also had a lot of stinging with Restasis and gave up on it and they both contain castor oil. Leiter's price list looks like a lot of their compounded drugs cost no more than my copay, but I don't know about the compounded Restasis. Some of the compounded drugs are expensive. Shipping is free there.

An FYI: Restasis' website says" Increased tear production was not seen in patients currently taking topical anti-inflammatory drugs or using punctal plugs." I had plugs put in, and was already on an anti-inflammatory drop, on the day the 2nd doc prescribed the Restasis for me! I also seem to react some to any drops that contain sodium hydroxide, even though docs all say it shouldn't bother me. Their website also says an adverse reaction of "burning" occurs in 17% of patients. And that known or suspected hypersensitivity is a contraindication. For some reason 2 docs told me it's normal and keep using it anyway. But I couldn't bear the pain.

Also found the ingredients for Restasis online, though I think they're on the packaging. "Active: cyclosporine 0.05%. Inactives: glycerin; castor oil; polysorbate 80; carbomer copolymer type A; purified water; and sodium hydroxide to adjust pH."

Personally, I think if the Restasis stings, the inner lids are swollen, and especially if they're also very red, it's not worth it. But that's just my opinion. I hope you get some relief soon.

[spmcc]

Re: compounded cyclosporine

I've had cyclosporine (.05% and other concentrations) in:

olive oil
corn oil
methylcellulose

I've tried those three (along with Restasis) and I believe there are even more vehicles for cyclosporine (per my local compounding pharmacy).

Any compounding pharmacy should be able to do this. And it's MUCH less expensive than Restasis. I paid ~$30 for a month's worth.

Good luck.

[Margaret]

I'm going on a year and a half and feel like any minor advances I'd been having have been washed away this week. It's been very tough emotionally. I agree, very hard to complain when others have it worse than you, but at some point I guess we have to say it's going to be our turn for a little while. Hang in there, there will be better days, wishing there were more!
Margaret

[Leelah]

That's tough. I'm sorry you're struggling, Mawsky. 4-5 months without seeing any improvement is a long time. I'm only been on it for a couple of weeks, and I'm already wondering if the restasis is worth the pain and the red eyes.. will the situation ever improve? By looking at my eyes now, I can't see how they will ever get any better. It's discouraging to say the least.

[Mawsky]

Hi All, boy it sure helps to not be alone in this, my eyes are doing a bit better, since I put the restasis aside again, this is my weekend to work, and there is so much cool air movement at work (hospital) which doesn't help, but still feel much better than just a few days ago, I felt that the information about compounding to be so helpful, if I get brave I may try in the. Future. Our weather here in Washington has turned cooler and a bit more humidity, so that may be helping, are you feeling any relief Margaret?? I hope so!

[Margaret]

Glad to hear your eyes are doing better. For some reason, mine are not. My eyes don't seem to be "gradual" in changes. They will slowly but surely get better and then a week later I'll wake up and have a terrible day and have very hard days for a week or more and then gradually get better again. It's very frustrating. I'm so glad to hear you are doing better though!
Margaret

[Mawsky]

Glad to hear your eyes are doing better. For some reason, mine are not. My eyes don't seem to be "gradual" in changes. They will slowly but surely get better and then a week later I'll wake up and have a terrible day and have very hard days for a week or more and then gradually get better again. It's very frustrating. I'm so glad to hear you are doing better though!
Margaret

Margret, I'm about the same, mine will gradually get better too, but when they are bad, oh boy, it really limits my life. One thing I may have discovered is, I think I'm allergic to something in the Theratears preservative free drops, I had bought some Similasan drops for allergies because I was experiencing a lot of itching of my eye lids, well low and behold the itching has gotten better, I put in a few drops of the Theratears and my lids itches like crazy, that can't have been helping things. For now my plan is to continue to use the similasan drops and occasionally the Genteal gel. It is quite misty out, when I got off work tonight at 11:30, it was such a fine rain really felt
great for my eyes, if it's still like this tomorrow try and get out if you can. I'm off tomorrow, so I will. Hope your feeling better soon Margaret.

[Margaret]

Yes, it does limit our lives doesn't it? Trying to figure out how to minimize that problem, but can't seem to yet! I too wonder if I get allergic to my drops. Was on Refesh in the first year and Dave on line here mentioned the Refresh tears may be irritating so I stopped and switched to Systane Balance. Now I'm getting the itchies and wondering if it's time to switch to something else again. Confusing.
Hope you are doing well too!
Margaret

[Mawsky]

Yes, it does limit our lives doesn't it? Trying to figure out how to minimize that problem, but can't seem to yet! I too wonder if I get allergic to my drops. Was on Refesh in the first year and Dave on line here mentioned the Refresh tears may be irritating so I stopped and switched to Systane Balance. Now I'm getting the itchies and wondering if it's time to switch to something else again. Confusing.
Hope you are doing well too!
Margaret

Margaret, what do you mean by itchy? Is it your eyes that itch, or the lids? I couldn't believe that the Theratears preservative free could have caused problems, but it did. Have you tried the Similasan for allergies? It may not be for you, but maybe we should switch off now and then I don't know?? My upper lids are especially swollen most of the time, and I notice when my eyes feel the best they are less swollen, makes me think reaction to something. Let me know if it helps to try another? With our hot humid weather have you been any better?

[Margaret]

Well it had been the inside corners of my eyes and reminds me of when I use to have a very rare allergy reaction to dust. I haven't tried Similasan, but had used some Lastacaft (prescription allergy drop). It seemed to be helping a bit but then started to get even itchier than before! So, now I'm trying to stay off of all drops, just keep my goggles on 24/7, chew gum, etc. My right eye is very painful, not sure what happened, but the humidity doesn't seem to be making a difference - darn it...My uppers are swollen too. Don't know what that's about and why they mysteriously look better at times. Let me know too if you figure anything out. I've been using cool compresses and that does seem to help a bit.