Restasis making eyes worse?

[shells]

I've read plenty of posts about how people could not tolerate Restasis because of the extreme burning. I've been on it about 4.5 months. Overall, my eyes feel worse, but I don't know what to do about the Restasis. It only burns a little, and it usually takes 30 minutes or so for my eyes to get back to "normal" after using it, so it is not the most comfortable drop, but it is certainly tolerable. My eyes just feel a little sore for a while after using it. If I can tolerate it, then can it be doing any damage? I'm not sure why my eyes feel a bit worse overall, but I have wondered if stopping the Restasis might help me. I've mentioned this to my doctors, but they tell me that the Restasis cannot actually cause your eyes to produce less tears, and that as long as I can tolerate it, I should stay on it, so I'm not sure what to do.

Any similar experiences? Also, if I did stop for a few weeks just to see how my eyes responded, would this pretty much put me back at square one if I wanted to start again? I just hate to throw away 4.5 months if it may eventually help my eyes.

-Shells

[neil0502]

Shells-

Puzzler, huh?

One question: did they do baseline measurements (tear breakup time, tear meniscus height, Schirmer's) before starting you on the Restasis, and have they done the same tests since you've been on it for a while?

I'm really hoping they took that baseline information. I think they always should.

My primary thought would be: if you don't feel like it's helping, and the numbers don't show that it is ... why stay on it?

OTOH, if you don't feel like it's helping, but the numbers show that it is, I might be tempted to ride it out a while longer.

All the best,

Neil

[shells]

Hi Neil,

I'm not sure what "tear meniscus height" is. I dont' think anyone has every mentioned that. My TBUT is usually pretty decent, but was before the Restasis too. Before Restasis I was a 4mm in the left and a 6mm in the right. Since Restasis, my scores are usually less than 4mm. This morning I was a only a 1mm. So, I have no idea? My doctor just tells me that those scores fluctuate around alot so it doesn't mean anything anyway. I guess my concern with stopping is that I've heard it can take 6 months or even longer to work. However, since my scores are worse, and my symptoms are worse, it might be time to give it up and see if that helps at all.

-Shells

[Jeff]

Hi Shells,

I just wanted to mention that I have been on Restasis for a couple of years now. When I first put the Restasis in after work (round 2) around 6:00 or 7:00 my eyes are at their driest from computer work all day. My eyes are always sore after installing the Restasis for a while, as well as some vision distortortion as indicated on the label. As you said I can and do tolerate it. It has been that way for quite sometime now. My doctor told me that if I wanted to I could lessen that problem by putting my favorite eye drop in and waiting 15 minutes and then use the Restasis. I know it took me alot longer to notice any benefit from the product than indicated by my doctor. After all I think it was pretty new at the time for them to know how people would respond to it.

Jeff

[neil0502]

Shells-

"Tear meniscus height" -- in simple terms -- measures how high the 'puddle' of tears in and on your lower eyelid is. It sort of gauges how big a reservoir of tears you have at time of measurement.

You know... there are so many excellent sites that give a practitioner a basic understanding of how to treat us tar-paper-eyed kids ... here's yet another that I found just Googling the TMH issue:

http://www.ophmanagement.com/article.aspx?article=86287

Anyway, Shells ... you might want to simply discuss what's going on with your prescribing physician. My gut tells me that--provided you can hang in there for a while longer--you may want to do just that.

Best,

Neil

[Lucy]

Shelley-I agree with Neil. If you've given four and one-half months to Restasis and are unsure, go a bit longer. I've heard some said it took at least 6 months and others 12 months. I know it's a long time either way. But, once you've started I'd give it longer.

I tried Restasis twice. Once for 6 weeks. Another time, more recently for 6 or 7 months. I did not believe there was an improvement after that length of time, although it's hard to "be sure." My RX insurance coverage changed when I went from working to disability. I used to pay $10/copay for Restasis and it became 50%. That was my deciding factor.

[Amy09]

I agree with Lucy. Be patient and try to keep up w/ Restasis for as long as possible to see if you eventually get any improvements. It was more than 6 months before I noticed a slight improvement. Although I have fortunately not had any of the unbearable experiences w/ Restasis that many others here have had (knock on wood), my eyes still sometimes feel irritated after taking Restasis, especially in the morning. My tip to you is somewhat similar to Jeff's. Instead of putting drops in 15 minutes before Restasis, I've found that putting in cold drops (I take plasma tears) 15 minutes after Restasis really cools down my eyes. It also helps drain out excess mucus still in my eyes after using Restasis, therefore decreasing some burning sensation. Good luck with making it past the 6 month mark Shells, and I hope i was some help to you.

[Carina]

cyclosporin

I am from Austria and here Restasis is not available. Anyway, my doctor gave me cyclosporin drops, which means Cyclosporin in oil (I don't know which oil). I don't know why we do not have drops like Restasis here but maybe they don't have the tecnology and as Cyclosporin is barly soluble in water they give it to us in an oily solution. Anyway, here it is a rather innovativ product. I use it in a concentration of 0,4% for 5 weeks now,which is much higher than restasis and I do not have any sideeffects. NO itching or burning, nothing.
When I started it, my schirmer test scores were: nothing on the right eye and 6 mm on the left. TBUT was not good either although I do not know the values. Now, 5 weeks later, those values are still the same, obviously, although things got really a lot better for me. I have some problems with swellings, which really got a lot better. My eyes feel more open now, and all the other discomforts are gone. Now my eyes "just" feel try, which is an improvment for me. As there is no inflammtion going on, my doctore told me that clyclosporin is not really necessary, but I do not want to stop as I feel better now. In two weeks I will get Plugs (another very innovativ product in austria ) So, there is hope for me

[dianat]

I'm happy for you Carina! I don't blame you for staying with what works...

[MissP]

New to the forum - same Restasis issue

Shells, I am new to the forum, but this was the first post I wanted to respond to. I went on Restasis last March. I saw GREAT success initially. Then in August, I had a really horrible allergy attack, GPC (giant papillary conjunctivitis) and became contact lense intolerant. I was then bombarded with every steroid known to man and a few antibiotics for good measure. During all the steroid use I went off Restasis as instructed by my doctors. I started again in January. This time, I am having very poor results - my eyes sting and burn so much so it is unbearable. However, my last Schirmer's test was over 15mm (it was 8mm and 9mm a month ago). I don't know if the pain is worth it. My doctor did say that after two months I may want to go down to once a day. Has anyone else heard about reducing the dosage?

Miss P

[calli66]

MissP-It's probably OK to reduce dosage--ask your doctor. My doctor told me to try once a day (last fall I was trying Restasis) because I was having terrible burning and inflammation from it. I was so miserable, tho', that I didn't try the half dose amount; I just gave up on it.

Other Restasis thoughts:
I saw a reference to a website (cited somewhere on Dry Eye Zone) where the doctor was telling patients to first put in a steroid drop, wait 15 minutes, then put in Restasis--as a way to solve the burning problem. I never tried that. Has anyone used that method?

Also, does anybody know if Restasis ultimately works to increase tears in post-menopausal women? Or is it mainly for other (non-hormonal) dry eye issues?

C66

[Delilah]

Allergic to Restasis

Hi Everyone and I've been reading the posts, especially about Shells problems with the Restasis, has anyone ever thought some of us may be allergic to restasis? If something hurts badly and isn't working then why use it? I am back on Restasis and I've noticed a mild burning but nothing more, this is my second time on it and the first time I had no side effects at all. If its burning your eyes so bad and it's causing pain I wouldn't use it anymore, but that is just my opinion. I also use the Muro 128 to help with my mucus strings and it burns like hell but I can take it and it doesn't last only but a minute, the burning that is. But if it lasted more than 15 minutes to a half hour I wouldn't use it anymore, just a thought that some people maybe allergic to Restasis, what do you all think? Ciao D

[kitty]

Allergic to Restasis?

I would think it more likely that some people have a hypersensitvity to Restasis, rather than a frank allergy. I had increasing discomfort following instillation of Restasis. The first two weeks were ok, but the second two weeks were miserable. My doc told me I had developed a sensitivity to the Restasis.

[shells]

MissP - Sorry to hear about your problems with Restasis. My doctor has never mentioned cutting down on the dosage, although I imagine that not everyone uses the 1 drop 2x a day as recommended. I think that because everytime I see a new doctor and I tell them I am on Restasis they ask me how much and how often. I thought the answer to that was obvious, but I guess not.

My doctor did tell me that if the burning got to be too much to handle, she could give me something to help with it...I think she was referring to a steriod like Calli66 mentioned. However, when I was on Lotemax for 2 weeks I did not notice a difference with the comfort of the Restasis. I also did not notice a difference in the comfort of my eyes at all either though.

My burning is not intense...at its worst, my eyes hurt for maybe up to an hour after. I guess I just thought that if something didn't feel good when I put it in, then how can it possibly be helping my eyes? However, after reading everyones replies, I've decided to stick with it for atleast the full 6 months. So, thanks for everyones input. MissP and Delilah, I hope that you are able to continue using it as well.

-Shells

[jim220]

MissP-It's probably OK to reduce dosage--ask your doctor. My doctor told me to try once a day (last fall I was trying Restasis) because I was having terrible burning and inflammation from it. I was so miserable, tho', that I didn't try the half dose amount; I just gave up on it.

Other Restasis thoughts:
I saw a reference to a website (cited somewhere on Dry Eye Zone) where the doctor was telling patients to first put in a steroid drop, wait 15 minutes, then put in Restasis--as a way to solve the burning problem. I never tried that. Has anyone used that method?

Also, does anybody know if Restasis ultimately works to increase tears in post-menopausal women? Or is it mainly for other (non-hormonal) dry eye issues?

C66

I went back to my doctor 3 days ago( he is my new doctor now and it was my first visit to his office). The main purpose of the visit was to get the upper left plug in my left eye removed because I did not need it anymore. My left eye was getting flooded all the time and it was just annoying. I told him that I must have my dry eye problem resolved so I can apply for a programming job soon. He decided to put me on restasis. I used restasis before and I had a very horrible reaction to it. My eyes were burning me like some one put some black pepper in them and they also were getting very very red. I told him about the problem and he told me he had the solution. He prescribed me both restasis and lotemax. He told me to put both in the frig. He also told me to use Lotemax first (after the lid scrub) then wait for 15 minute then apply restasis. The result was incredible.I did not have any reactions so far except for the burning sensation for a few minutes then it is gone. After that my eyes feel very good and refreshed and they stay the same until I apply the next dosage. Never experienced this with any combination of eye drops. You guys can tell your doctors to give you this combination of drugs. It worked for me plus I like lotemax because it is a mild steroid and I used it before for months and my IOP never changed. It is kinda safe. The doctor told me to use it only for 2 weeks until I go back and see him on April 10. I will keep you guys informed. I hope this helps



Jim