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]

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]

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]

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]

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

[calli66]

like some one put some black pepper in them

for me: cayenne pepper!

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.

Makes me want to try Restasis again. But only if I hear something positive from some other older dry-eye sufferer like me.
Thanks Jim
C66

[jim220]

for me: cayenne pepper!

Makes me want to try Restasis again. But only if I hear something positive from some other older dry-eye sufferer like me.
Thanks Jim
C66

Hi calli, well you can say it burns like hell from the moment you apply the drop until the moment you apply the next one. Not anymore. I would also recommand that you put all of your drops in the frig. They are more effective for some reason and cold drops are very soothing especially when your eyes are very irritated. Yeah, about older dry-sufferers, my previous doctor who put the plugs in my eyez told me that mostly women in their 40s and up benefit from these drops. LoL, I am not a woman and not in my 40s . I wonder if they will work for me. I will keep using them as long as they don't make my eyez worst. I don't know why my eyes felt a little bit better even though it is my only 4th day using them . No gritty feelings whatsoever which is kinda weird and I know it is very early for Restasis to start working and it might be the lotemax. I used lotemax before and my eyes did not feel this good. I really don't know but all I know that my eyes feel better after using this combo.

Jim

[Rebecca Petris]

I would also recommand that you put all of your drops in the frig.

Jim... did you mean Restasis specifically or literally all drops?

Hate to contradict here but it cannot be assumed that this is a good idea with drops in general. They may "feel good" cold but some formulations can be destabilized if stored at cold temperatures and perhaps have reduced efficacy. I don't know too much about it but I wanted to comment because I know Dr. Holly always used to advise not to store Dwelle or Dakrina in the fridge (not a good thing with certain polymers) and so I would guess there may be others that have a problem with cold storage.

[jim220]

Jim... did you mean Restasis specifically or literally all drops?

Hate to contradict here but it cannot be assumed that this is a good idea with drops in general. They may "feel good" cold but some formulations can be destabilized if stored at cold temperatures and perhaps have reduced efficacy. I don't know too much about it but I wanted to comment because I know Dr. Holly always used to advise not to store Dwelle or Dakrina in the fridge (not a good thing with certain polymers) and so I would guess there may be others that have a problem with cold storage.

I don't know about dwelle and dakrina, but yeah, I meant restasis and lotemax. Even artifical tears such as refresh plus, my doctor said they are more effective when they are refrigerated and I found that to be true although as I said in earlier post that artifical tears never helped me and that still applies. He told me that drops are more effective when refrigerated and he gave me a sample of refresh plus that was stored in the little frig in his office. You know what is so special about this doctor, he has DES and he feels what the patient is going through. I think it is good to have a doctor who has the same condition as the patient because he will try his best to treat you since he knows how it feels .


Jim

[DrG]

Jim... did you mean Restasis specifically or literally all drops?

Hate to contradict here but it cannot be assumed that this is a good idea with drops in general. They may "feel good" cold but some formulations can be destabilized if stored at cold temperatures and perhaps have reduced efficacy. I don't know too much about it but I wanted to comment because I know Dr. Holly always used to advise not to store Dwelle or Dakrina in the fridge (not a good thing with certain polymers) and so I would guess there may be others that have a problem with cold storage.

Ah, now you're starting to sound like a chemist, Rebecca. Of course, temperature does affect solubility, and cold could conceivably cause some solutes to precipitate out of solution.

However, both Lotemax and Restasis are suspensions, i.e. their active ingredients are not held in solution, but are in the form of tiny particles dispersed in the vehicle. This is why you must *SHAKE WELL* before use.

Just some tidbits from an old "chemist."

[MissP]

I think I was on another site where someone directed me to look at the Restasis side effects - red, burning eyes. I went down to once a day and I do try to put in Systane FREE (LOVE IT) first. I was on steroids for months - so I am going to stay off them for a while. I do find that Nevanac works if your eys feel sore. It is a Non-Steroidal Anti-inflammatory. But it is expensive $40 for a small bottle with insurance.
I am on month three of Doxy and I think it is helping. My advice - talk to your doc and go down to once a day Restasis if it is causing your eyes to be red and burn all day. I think I am getting BETTER relief with one!

Miss P

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]

I just decided to start up on Restasis again--only been on it now for 5 days, but I'm doing much better than when I tried it first (had burning before).

My dry eyes and inflammation were severe when I first tried Restasis, and I didn't have the benefit of knowing all the helpful tips for controlling the flare-ups, that I've learned on this forum.

This time I'm putting the R in my eyes first thing in the morning, then going back to bed and keeping my eyes closed for 15 min. I use that Genteal Gel at night which seems to heal and soothe my eyes so they're not so "raw" when I put in the Restasis.

I wear contacts, and after I take them out in the evening, my eyes feel pretty moist--so I put in my second dose of Restasis then.

AND- I have learned that, for me, certain OTC eyedrops aren't compatible with each other and with Restasis--mainly Bion Tears. These are comfortable when used alone, but if I use anything else around the same time, my eyes burn terribly (like saline, GentealGel, even tap water while washing----weird...) I'm still trying to figure out what's reacting with what.

If all goes well this time, I plan to go back to the Dr. at the end of 3 months and get a Shirmer test done. I never did get one done after my 3 month Restasis trial last year--so I don't know if it increased my tears at all.

C66

[Delilah]

Hi Everyone,
Hope you all are doing good. I've been on the Restasis for about a month now and it seems to be doing nothing but I am being patient, as for the NAC drops I am a bit concerned, it has not helped dissolve any of the mucus strings, in fact I think it's drying out my eyes even more and ruining the tear film even more, what tear film I have left Some one from the Health boards website said it might be doing this and adding to my Severe Dry Eye even worse and I've noticed that my eyes feel more dry, the only reason why I thought the NAC drops would work was because it helped dissolve mucus and filaments with patients with FK.
I don't have FK, I have severe dry eye and MGD, so I am going to try Castor Oil Eye Drops, I think a form of oil would do me better than drying out my eyes even more. I was wondering why my new eye specialist I went to see didn't think of the NAC drops drying out my eyes more? I am going to discontinue using the NAC drops and just stick with the Restasis and look into these Castor oil eye drops. How is everyone so far? I just don't understand why we have to suffer from all these eye problems when life is hard enough? Also I had a question, are we suppose to put the Restasis in the fridge? Mine is just sitting on the counter? I am a bit confused on which eye drops to put in the fridge and which ones should stay out? I know that the NAC drops have to be in the fridge. Anyway's I hope everyone has a good weekend and trying to stay positive D

[calli66]

Good to hear from you Delilah.
For myself, I've been one week on Restasis (the "second time around"). Had one horrible day--don't know why, but I guess that's "normal" for me, Restasis or not.
I don't think you have to put R in the fridge, but it wouldn't hurt--especially if you are using the vial for several days (I do that--to save money). I suppose there could be a greater likelyhood of bacterial contamination if left at room temperature (especially when summer comes). I usually put a bit of aluminum foil over the open end of the vial--whatever good that does.
C66

[Gaye]

Hi Delilah - you don't need to put the Restasis in the refrigerator, but some people do to make it feel more soothing. My doctor just told me to put the vial in a shot glass (that's assuming that everyone has shot glasses laying around - with dry eye, seems like a shot of something might help once in awhile) to be ready for use at the next dosage time.

[kitty]

I know this has been posted before, but according to the Restasis product insert (www.restasis.com):

"Storage: Store RESTASIS® ophthalmic emulsion at 15° to 25° C (59°-77° F)".

There has been some discussion that storing this medication in the fridge may make it less effective.

[DrG]

Hi Everyone,
Hope you all are doing good. I've been on the Restasis for about a month now and it seems to be doing nothing but I am being patient, as for the NAC drops I am a bit concerned, it has not helped dissolve any of the mucus strings, in fact I think it's drying out my eyes even more and ruining the tear film even more, what tear film I have left Some one from the Health boards website said it might be doing this and adding to my Severe Dry Eye even worse and I've noticed that my eyes feel more dry, the only reason why I thought the NAC drops would work was because it helped dissolve mucus and filaments with patients with FK.
I don't have FK, I have severe dry eye and MGD, so I am going to try Castor Oil Eye Drops, I think a form of oil would do me better than drying out my eyes even more. I was wondering why my new eye specialist I went to see didn't think of the NAC drops drying out my eyes more? I am going to discontinue using the NAC drops and just stick with the Restasis and look into these Castor oil eye drops. How is everyone so far? I just don't understand why we have to suffer from all these eye problems when life is hard enough? Also I had a question, are we suppose to put the Restasis in the fridge? Mine is just sitting on the counter? I am a bit confused on which eye drops to put in the fridge and which ones should stay out? I know that the NAC drops have to be in the fridge. Anyway's I hope everyone has a good weekend and trying to stay positive D

Delilah,

It was me who said that topical NAC is used to help dissolve mucus filaments associated with filamentary keratitis. Plain old mucus strings not associated with filamentary keratitis are common in dry eye. If you don't have filamentary keratitis, then I don't think you will note any improvement by using it. Topical NAC is also used for a number of other medical conditions including psoriasis and cystic fibrosis.

Discomfort from using NAC could be related to the concentration which greatly increases the osmolarity of the tear film.

[Delilah]

Thank-you Dr.G and Gaye, Gaye you made me bust up laughing when you said we all could use a shot of something with dry eye lol. I hope all of you are doing good and a question for Dr.G, how come Dr. Tabin in Salt Lake City didn't say something about the NAC drops drying my eyes out more? Since I don't have FK then how come he gave the okay to perscribe that to me? Did he do bad or good? Im going to call the Moran Eye Center tomorrow and try these Castor Oil Eye drops, I threw the NAC drops away, they dried my eyes out like freakin sand paper. Now Im just on the Restasis and a gallon of whisky ha,ha,ha, just kidding, but the Restasis and my preservative free eye drops, Im giving Restasis a whole year and if it doesn't help then I don't know what I'll do? My last resort is to go to Paris France since I am catholic and see if that blessed water from St. Lourdes would cure them? Who knows if it would, never hurts to try right? Anyway's Im smoke free I can't believe it, not spending 7 bucks a day for smoking, no more smelly clothes, hair and hands, no more ugly cough in the morning and no more short winded when I walk!!!
I do feel better, but I just wish my eyes would do better? I hope every one is doing good and I will keep in touch. Thank you all for your help and support, I don't know what I'd do without all of you, you all truly good friends. If you ever come to Idaho I'd be glad to show you around. Thanks a bunch Delilah

[DrG]

Your doctor in SLC did good! How would he know that NAC would dry your eyes out? He's probably never prescribed it. He did it because you wanted it, and he said to himself: "What the heck, why not, she needs a prescription and I will help her."

Kicking the smoking habit was the best move you ever made. Now, start on a regular exercise program. Going to Paris, France won't help your dry eyes, but you may forget about them for a few days.

[Delilah]

Dr. G I wanted to let you know that Dr. Tabin had prescribed the NAC drops many of times and he works a lot with Leiters pharmacy in California so he is familiar with them. He is a wonderful doctor, I hope I wasn't making anyone think he's bad, I just wanted to know if he did good or bad and it's true I did want the drops and it never hurts to try as long as it's not going to hurt me, it just didn't work. Dr. Tabin took the time to help me and answer my questions and he really cares. Yeah going to Paris probably wouldn't help my eyes but if it did it would be a miracle Do you know any thing about the castor oil drops? Would that help my eyes? Thanks Delilah