Anyone using Restasis for dry eye syndrome?

20 years ago

I have punctum plugs in my lower eyelids which have helped tremendously, after a horrible winter last year. My eyes were constantly irrited, sore, itchy, red. I also wear gas perm monovision contac lenses, have worn contacs for about 35 years. Doc says that that is not a problem.

Now that the humid summer is gone, the dry atmosphere is not helping. I'm still putting Thera-tears (and others) in my eyes 6-7 times a day, and the more gel-like, before bed.

I'm considering getting punctums for my upper lids as well. Anyone have them both?

But back to the posted question.... does anyone with my-sounding-condition get any relief from Restatis? I heard that if you already have plugs, then it won't help, which is disappointing...was just curious if there's anyone with experience.

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Comments (124)

tx_heidi32
17 years ago
A follow-up to my earlier message: I've been using the drops for nearly three weeks now, and the burning has diminished greatly. I still have a slight burning sensation that starts about 15 min. after using the drops, but it goes away in about half an hour. So for anyone who is having problems getting used to these drops, stick with it... it gets better! (Still haven't seen any appreciable difference in my vision, though.)
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gordyt
17 years ago
I have been using Restasis for about 4 months and have not noticed any improvement until a few days ago, all of a sudden my eyes feel more moist and lubricated with a lot less burning. I am surprised that I did not notice much gradual improvement but rather a sudden one. I really hope this improvement continues. I hope everyone finds some relief with the treatment you are taking and believe Restasis does not work for all but only a minority.
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Hi Karen, this is going to be a bit long but please bear with me 'cause early Sjogren's is sneaky & I'd like to give you a reasonably comprehensive overlook. I'll start with Dry Eyes & Dry Mouth 'cause they are hallmarks of Sjogren's. Dry Mouth - Even as a teenager, I remember always having a drink with me although I don't exactly remember why. Never went to the store, never went on a date, etc. without that drink. It was a part of me. It wasn't as if I felt urgent need to hydrate myself. Just always this desire for frequent small sips. That continued for the next 30 years but didn't get any worse. About 6 years ago, it became uncomfortable enough I started mentioning it first to DH. "Gosh, my mouth feels like cotton balls!" Soon, it was bothering me enough I mentioned it to my primary care doctor. I was taking Flexeril at the time for a spinal injury & my PC doctor just shrugged the dry mouth off as a side affect. Now, it's so dry it bleeds. Mouth sores - yes. Dry lips - yes. Blisters - yes. The dry mouth has progressed to now being nearly impossible to deal with but that has taken decades to reach this point. Dry Eyes - My eyes have sorta "itched" for several decades. I never thought much about it. I've had eye infections over the years also but they were far enough apart I didn't think to mention it to a doctor when a new one turned up. Dry eyes have not been my primary focus with Sjogren's but they are now dry enough my opthomologist pretty much insisted I have the Eye Plugs inserted. They've helped, a lot. I still need drops. Eye lid infections - yes. Sores in the corners of my eyes - yes. Swallowing, Talking, Choking - My Sjogren's has progressed to where I can hardly talk anymore. I also have trouble chewing & swallowing. Many foods are impossible for me to eat. My diet has changed dramatically in the past 3 years. I also choke - especially on pills but also just trying to eat a meal. At night, my throat swells & sticks together blocking off my air. I wake up in a panic reaching for water. Dry Skin - Again, for as long as I can remember I've had dry skin. I'd go through gallons of lotion. Now, I use prescription stuff that really helps. Fatigue - Gosh, just thought I was "weird" & a bit unlike my friends. I never had a curfew as a kid. Mom knew I couldn't stay up late enough to need a curfew. She was right. Sometimes, I would fall asleep practicing with my chin on my accordion. Again though - nothing that seemed like a trip to the doctor was necessary. I will say though that the fatigue was complete. Sometimes, it felt like lifting my arms to brush my hair was impossible. Muscle/Joint Pain - Today "this" hurts, yesterday "that" hurt. Everyday, somewhere else hurt. The pain would last for a day or weeks & then disappear just as mysteriously as it had arrived. I thought it must be "normal" & I was just a wimp. I was diagnosed with fibromyalgia at some point & from then forward whenever something hurt doctors would just shake their head & use that diagnosis as explanation for my pain. Many times the pain was unbearable. I once overdosed on aspirin trying to get relief. That episode resulted in more blood work. Negative for everything. The pain though continued. In my mid-40s, I had an extensive & unusual spinal surgery to correct a rare injury. The surgery almost did me in. After that surgery, doctors blamed the surgery every time I burped. I should note that I've had 13 major surgeries for "unusual" stuff. Fevers - I have a history of spontaneously running a fever. Fine one minute. Poof, next minute...I've got a fever of 101+ degrees. An hour later, I'm fine. Nightsweats - I've had then for decades. Always associated them with some cancers (I'm also a multiple cancer survivor) so I was afraid to mention them to my doctors. But, my fear didn't make them go away. Still have them. Still haven't told my doctors. Heart Palpitations - Ended up in ER. Diagnosed with "Anxiety Attacks". Nope. Sjogren's. Sensitive to Temperature Changes - I'm either cold or hot. There's only about a 5-8 degree range I'm really comfortable. It's not just chilly or a bit warm either. I'm either shaking from cold or in ER from heat stroke. So, we keep our house even temperature year around. Sometimes, cost isn't everything. Dental - Gosh, where to begin? Let's just say I fought a good fight but just a couple years ago I said, "ENOUGH! I can't tolerate this anymore. Pull them out, every single one - NOW! I'm not leaving this office until they are gone." Even implants would not stay in my jaws. I've pulled two that were erupting from my jaw by hand in the middle of the night to stop the pain. Now, I've got dentures (should have done that years ago!) but my mouth is so dry my tongue sticks like glue to the dentures & bleeds when I try to move it. Ugh. Neuro Pain - This is now a serious problem. I have no feeling at all in my legs/feet. Seriously, I can't feel the floor or anything else. Sharp pins/needles type pain virtually constantly. Stress - I had a garden accident July '09 & re-injured my spine around the surgical area (right between the shoulder blades). My back surgery had been so "unusual" a hotdog surgeon was brought in from Arizona. He published a "White Paper" on me that lives for eternity in medical journals along with the video they took of the the entire surgery. Anyway, the re-injury hurt so bad I had a stroke. Yep, I met the definition of "stressed" there for awhile. As I started to settle down from this little incident I noticed that my mouth was drier, my eyes were drier, my muscles/joint pain was worse, the fevers were more frequent, etc., etc., etc. I could go on with other symptoms but I think that's enough for you to get an idea of Sjogren's. Eventually, I found a doctor that treated me as a whole patient & didn't just look at the reason I'd written down for that particular appointment. It led to my diagnosis for both Lupus & Sjogren's. A word about the bloodwork is in order here, I think. I'd had these tests multiple times before - always negative. Many doctors said, "Tricia, I "think" you've got Lupus but your tests don't bear confirmation of that diagnosis." One even prescribed Placquenil & my fevers virtually disappeared. Unfortunately, that doctor left the practice & his replacement didn't believe my tests justified the risks of Placquenil. The fevers returned within a few short months. Anyway, my current primary care doctor redid the bloodwork yet again. This time, I was positive for both Lupus & Sjogren's. It tooks decades for those tests to turn positive. My last SS-A test results were 2.78. Positive. My SS-B test results were 3.25. Positive. Also, Sjogren's patients often show Vitamin D deficiency. I'm almost always testing deficient & take 50,000 mgs once/week for 4-8 weeks then off for a bit until we test again then back on for another 4-8 weeks. You will also, most likely, have an abnormally high SED rate. It will vary if you're having a Sjogren's "flare". BTW, that's the best time to make the doctor's appointment - when you feel awful, like you can't drag yourself anywhere. I'd recommend finding a doctor that will treat ALL of your symptoms. Treat you as a whole person with this variety of things happening that may seem unrelated, to you. Tell your doctor every little thing. Sjogren's is SYSTEMIC. It affects your whole body. Yes, there are specific markers like the dry eyes/mouth thing but many Sjogren's symptoms mimic other diseases. Diagnosis is often overlooked both due to doctor indifference & lack of persistence in patients. There is no defined Sjogren's protocol for treatment. It's a "treat it as it appears" approach for most doctors. (bummer) But, a protocol is being developed now & the goal is that it will be available to doctors in 5 years (I know, sounds like an eternity but, like breast cancer, you have to start somewhere). I've recently been excepted at John Hopkins. They have a specific Sjogren's department & a doctor heading that clinic who has chosen Sjogren's as his life work. My first appointment is October 18. I've received volumes of "stuff" from John Hopkins regarding my appointment that will be two full days. I'm got appointments for about a dozen specialized tests. I've got advanced Sjogren's & frankly feel just about defeated. After 50+ years, it's taken a toll. But, I accomplished a lot with my life - Sjogren's be damned. I don't know if my disease process will help you identify what you're experiencing, or not. But, don't ignore your symptoms. If they sound like they could be Sjogren's - be persistent. Just know that it will be a journey to diagnosis. Not a short sprint. Since getting me as a patient my PC doctor has been able to make a diagnosis on another women for Sjogren's. She's thanked me saying she would have overlooked the clues had it not been for having me as a patient. We're learned together about Sjogren's. So, doctors are becoming more aware & Venus Williams' diagnosis, hopefully, will also draw more attention to this autoimmune disease. mboston, don't give up. If your gut feeling is correct (and, IMO, our bodies usually tell us the truth) then you'll need to stay in your doctor's face until you get a blood test that pops positive. That can be illusive. If you're having a flare...make an appointment. Tell the receptionist that next week is not OK...you need an appointment tomorrow! /tricia
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Hey y'all -- I wrote Wednesday evening but it must not have posted -- I'm sorry! I was saying YES, terri & L, I want Sjogren's to get ruled out more than I want it confirmed, and there seem to be many overlapping symptoms of general menopause and this more specific syndrome. I have been reading, though, and saw that GERD is a symptom too -- in the last few months I've suddenly developed it after never having it my whole life, and I've been wondering *why*. And these mouth sores--what the *heck* -- I've never had these before. They're so *strange*. Maybe it's all coincidence and not this. I'd really prefer it that way. I have to wait until at least 5/23 to start finding out. I understand that there are some blood tests that will really help narrow things down. sable, right re the sugar/acids. I was just saying that in addition to the problems with mouth-dryness issue, I didn't want to add more potential momentum to the weight gain I'm battling. I'm sitting here drinking my coffee with a little sugar, too, so we're renegades together : ) Thanks for the lead on the person on the cooking forum, linda. Mystic *used* to be near me, before we moved to Oregon : ) Off to have a afternoon-to-evening date with my husband! -- DD is off at the U of O at her first Model UN conference until late Saturday!! : )
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An important aim with coil cleaning is to make sure that any cleaner that you apply is neutral to basic in pH (maybe 7-11) If you go outside that on the low side, you risk corrosion of the coils. I'd limit my exposure to 10 minutes in that case. Anything certified as a disinfectant will work in the period indicated in the directions if the other directions are followed because that is the period that the EPA testing used. In fact, I think that the EPA only uses one time period, 10 minutes. I've been using cleaner/disinfectants that are badged and tested for HVAC, NuCalgon products (Evap-Fresh) for the most part. There are duct treatments available as well. There are 4 chemical disinfectants that are commonly used, hypochlorite (bleach), alcohols, phenolics and quaternary amines. Bleach works on fungus and bacteria, but is highly corrosive to metals. Alcohols evaporate too fast, although isopropanol sticks around longer than ethanol, and are a fire hazard. They are not not particularly effective on fungus. That leaves phenolics and that is what lysol is (mixture, IIRC). It also leaves quaternary amines. Either will work on fungus, bacteria (and viruses). Phenols tend to be lower pH solutions, acidic. I do not know if that is because of stability concerns or that they need to be acidic to be effective. They are not as corrosive as bleach, but why mess with it when you have quaternary amines (sometimes called "quats" for short.) The phenols can be tough on plastic as can bleach. If the pan is not draining promptly and completely, try to fix that. Are you using pan tablets of some sort? If not, give that a try. Copper is a natural microbe growth inhibitor. If anyone offers a copper coil, it maybe worth it. Can you tell that I deal with disinfecting lots of different materials at work? Here is an anecdote for copper. We have some incubators that have some have some ultraviolet lights that are supposed to inhibit growth in the humidity source (water in a pan). It is an expensive system to maintain and it does not work as far as I can tell. I bought a little 4 or 6 g bare wire, bent it into a U shape and put it in the pans. Problem was solved. I was told that some people use pennies. I guess that would be zinc. Good luck, IMHO, not enough attention is paid to this problem and it is a health problem.
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stimpy926
Original Author
17 years ago
brianbld, The Visine people recommend Restasis for dry eye
syndrome, not their own products. I'd be careful with that, check with your doc. on what to use!

Here is a link that might be useful: Visine
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wildhare13
17 years ago
thank you all for being here!
I have had corneal problems, detached retina.. laser resurfacing, stromal punctures, plugs in my tear ducts.. tried humidifiers.. the last time a new doctor prescribed restasis. My eyes got horribly red and irritated. I stopped the drops 3 days ago.. now my eyes are watery, blurry... feels like I'm getting pink eye.. I see the doctor thursday.

However.. after reading your posts.. I will give restasis a try!! This is awesome.. thank you all
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acey
16 years ago
Interesting, as I glanced through this extensive thread, I do not believe I saw that anyone who started on Restasis indicated they had to undergo an INITIAL REGIME involving the use of a steroid drop such as Lotemax, 4X/day, along with Restasis 2X/day, drops separated by at least 10 minutes, for two weeks, then to decrease the Lotemax to 2x/day, continue the Restasis 2x/day, again drops separated by ten minutes...for another SIX weeks, then to stop the Lotemax and stay just on the Restasis 2x/day.

My doctor explained to me that Restasis can be irritating, and the comcommittant use of the Lotemax (or other steroid such as Alrex) helps prevent initial irritation as the eye adjusts to Restasis.

I will say that my Shimer's (sp?) dry eye test revealed a big fat ZERO tear production for both eyes, and I started the initial Restasis regime just last week.

I can honestly say it is working, and I'm not really noticing any major stinging or other irritation. I have noticed that upon awakening, my right eye (the worst of the two) now feels normal in the socket...I mean I don't notice it there, like I used to. And I awoke the other night in the middle of the night, and I had a tear in each eye!!!!

I also have glaucoma and take one eyedrop of Xalatan each night. I'm 51.

So did your doctors use the initial regime? Or straight to the Restasis, which may be why some of you are not comfortable?

Anyhow, I go back once the 8 week initiation period is over (end of May) to see if I make tears (and of course to have my pressures checked again for the glaucoma).

But hey, I can't complain either....pretty healthy otherwise!!!
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woodnymph2_gw
16 years ago
No, no initial regime. The stinging at first with Restasis is worth it for me. What I hate most is the expense and wish there was a generic.
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rjk2247
16 years ago
I started using Restasis about a year ago and followed it up with lower-lid plugs about 4-5 months ago. Neither seems to really be working - HOWEVER - on FEbruary 15th of this year, I suddenly - within TWO weeks - lost ALL my scalp hair following by losing all my body hair as well. Now I know alopecia is caused by stress - but I have been in much worse stressful situations in my life than I am in right now - not to mention that suddenly going bald and hairless isn't stressful on its own. Do you think that since Restatis (cyclosporin) is an autoimmune drug and alopecia is an autoimmune disease, that the darn drug has reversed its affect or something? I am still using Restatis 2x/day and none of my hair anywhere is showing any signs of growing back. I'm making an appt. to see the eye doctor today...
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stimpy926
Original Author
16 years ago
rjk2247, I wouldn't necessiarily blame stress solely as the reason, or the Restatis. In reading about it, there is no known reason for alopecia. I think you should see your regular MD first, before your eye doctor, for the hair loss. My sympathies, I never heard of this autoimmune condition before. Since dry syndrome is part of the same autoimmune world as rheumatoid arthritis, it does sound possible, as now I am being affected by other rheumatoid symptoms. It's bad enough there are cancers, bugs, virus's out there to attack us, do we need our own body to attack us... argh?!

Now, for people suffering under cost of Restasis, and the patent has not as yet expired - clearing the way for generics, heed this (at the risk of being scolded for advising carelessness, however, my competent eye doctor told me to not throw away the vial after one use):

My new Rx received this week contains 4 containers, each holding 32 vials (128 vials total) cost, with freight $391., plus change. According to the instructions from the manufacturer, you put ONE DROP in each eye, then discard the rest of the vial. This is done twice a day. This means:

2 vials/day = you use it all up in only 64 days, a little over 2 months, at a cost of $ 6.11 per vial

There are enough drops in each vial to last me at least 3 DAYS, @ twice a day dosage. This means:

1 Rx of 128 vials x 3 days = 384 days divided by 30 days (-/+ per month) = 12.8 months, at a cost of $1.02 per vial

The Rx is ONE DROP in the eye, not an entire vial. There is no reason to discard the rest of the vial, except to satisfy the lawyers and insurance companies. After 4 years, since going on Restasis, using up the vials has never presented any problem for me.

Here is a link that might be useful: Alopecia Areata
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woodnymph2_gw
16 years ago
That is really scary. Thanks for alerting us about this. I've not had any problems, thus far. Please let us know if you find out more and what your eye doctor tells you.

I am finally learning to make one vial last me 3 times. I seem to need more than one drop in each eye, as I have found I need to lubricate the outer eye area, not just the inner. Just doing that really makes a difference.

Has anyone else noticed that during this season of high pollen their eyes are dryer? I know mine are, and the winds do not help.
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woodnymph2_gw
16 years ago
I just had another thought: I have a friend who also has your symptoms. She has Sjogren's Syndrome, which is an autoimmune disease. You might ask your family doctor to check this out.....
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stimpy926
Original Author
16 years ago
My eyes feel dry when atmospheric humidity is low. I don't have seasonal allergies. And inside when the indoor heat is blasting in winter. One Restasis drop is plenty for my entire eye, actually results in shedding out excess. Also, the stinging I used to have, from putting supplementary drops (Systane, Genteel, etc.) has stopped. I put in gel drops before going to sleep, drops when I get up in the morning, after taking out my lenses, when it's dry... drops drops drops.
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rjk2247
16 years ago
I've heard about the gel drops - any recommendations as to brand? I decided to stop my Restasis for one week prior to seeing my eye doctor. I just have a funny feeling about the Restatis doing the reverse on me. I've already seen the regular doc and a dermatologist (3x). Both of them admit they don't know much about autoimmune disease and researched it on the same websites I did. My girlfriend has Sjogren's. I'm going to re-visit that website and see what clues I can pick up. Also Mayo and Marshfield. Thanks for the advice and thoughts. I'm reallly spinning my wheels on this one. No matter how great the wigs look (and they still don't look like my hair) I'd still rather have my hair, eyelashes & brows back.
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acey
16 years ago
I have discovered a new trick for my dry eyes that may help others with this problem I've been having....

My problem was when I take a shower, even the water over my closed eyes would be irritating to them, and when I would get out of the shower, both eyes would be very red (like being drunk red!) and glassy. A REAL NICE LOOK FOR THE WORK DAY AHEAD....NOT!!!

I assume it is because tap water is a different ph than the ph of tears, and further dries out the eyes.

This was occurring despite the restasis therapy, which IS really helping.

Anyhow, my trick that seems to be working is to apply a drop of a very viscous lubricant (I have celluvisc) right before I shower. This drop has a thickness to it and it blurs the vision, so it is suitable for bedtime use. But for me, it has added a film to my eyes, which seems to protect them from the harsh tap water, and by the time I'm done showering, the filminess is gone, and the eyes are not red at all!!!!

Hopefully this idea helps others with red eyes after showering!!! Dry eye ain't funny!!!

Acey...
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wiredoctor_bigtube_net
16 years ago
I had Lasik Surgery 10 years ago and untill one year ago had no problems. In the last 12 months I have been on Lotamax drops 3 or 4 different times. Currently I take 2 Doxycyclin capsuls daily, Pataday drops once a day, Restasis drops twice a day and Refresh Plus on demand. I have two plugs in my right eye and one in my left.

My eyes are sooooooooooo dry especially in the morning. I keep Refresh Plus drops next to my bed and use them if I wake in the night. I have not found any relieve using the Restasis after 3 months but will continue until I am told differently.

Something my Doctor has me doing is to wash my eyes 2-3 times a day with Baby Shampoo and that actually helps.
As of today she has me trying a NEW eye drop called "Fresh Kote". I just put it in for the 1st time and it was very soothing. You do need a perscription for it.

A note concerning reusing the Restasis. A Doctor at an Eye Institute in FL told me to use one vile per day. After the 1st use I was to put the vile in the refrigerator to use again at night but then throw it away because there is no presevatives in it. I put the vile in a perscription bottle to hold it upright.

I recently was checked for Sjogrens and it came back negative. I am grasping for answers or help.
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woodnymph2_gw
16 years ago
Lois, Doxyclin will cause dry eyes! Are you taking it for Rosacea?

I use one vial per day, too, even though the ads say to use only one drop 2 x a day. Are you going to the outer edges of your eyes? I found I have to.

I was told by my eye doctor that I ought not to have Lasik Surgery because it only increases the dry eye syndrome. Possibly because you had this, it is making the situation worse.
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uleij
16 years ago
I have lower plugs, have been in rgp's for 10+ years. I only started having a problem with dry eyes about 2-3 years ago. My doc says it has nothing to do with the rgps. Restatis was prescribed years ago, but when i went to get the prescription it was $55!!!!!!!!!!! I said hell no. I have been out of contacts for almost three months and my dry eyes have gotten soooo much worse. Doc explained that happens a lot because the contacts are a way to produce tears in your eye. Even with the plugs nothing improved. My eyes do not produce tears and when I do cry or put artificial tears in, they are sucked up so quick, it's actually quite amusing to watch. So Doc prescribed restatis again about 1 month ago, I held off goign to the pharmacy because of the sticker shock, finally went two weeks ago, it was only $45 for 64 vials. SO not nearly as bad, and worth it, for the pain recently. Overall, I think the restasis is starting to work, but dry eyes suck. Give up corrective lense surgery because the specialist I saw said if anyone doc does surgery one someone with dry eyes they should lose their license. My doc said to not give up hope though because of course they are coming out with advancements.
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carla35
16 years ago
In addition to Restasis, I've been prescribed Evoxac (cevimeline) -- an oral pill for dry eyes. I think it is really a pill for dry mouth, but is being used off-label for dry eyes. It does have some side effects -- some sweating, some extra of salivia (if you don't have the dry mouth problem), etc... but it really seems to work well when my eyes get extra bad.

Anyone else try/hear of it?
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coco14
16 years ago
Am having good results with restasis (3 months now) but it's 110$ for 32 vials in NYC! What's the longest I should use 1 vial? So far, I've been covering them with foil and refrigerating them and using over 2 days....does anyone think I can extend this to 3 or 4 days....it's sooo expensive without insurance. Thanks for any input.
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acey
16 years ago
Restasis is a one drop per eye med. More than one drop will just leak out the corner of your eye. Don't try to cram a half a vial into the eye, you are just throwing $$$ away!

Now, the package insert says to discard after one use..that is to protect the manufacturer, since there are no preservatives in it.

Coco14:
My eye doc told me when she gave me the RX, that once a vial is opened, I could store it in the fridge, open end up in a little "shot glass" to keep the tip from being contaminated. The fridge keeps the temp low so germs don't grow, since it has no preservatives. The eyeball is not a sterile environment anyway, so just keeping the med refrigerated once opened, dropper tip untouched, should be a likely way to extend the product without incidence.

By doing this, I get 4 days worth out of one vial, thereby really reducing the cost. Try that, Coco14 to save $$$. (My shot glass is a souvenir from Little Cayman island, so it makes me remember my vacation there!!!)

What no one has responded back to me yet, is that when she gave me the initial RX, she had me also do 8 weeks of a prednisone drop like Alrex PRIOR to instilling the Restasis. This method of introducing my eyes to Restasis caused me no burning or stinging as others have mentioned. Now I'm finally weaned off the Alrex, and now solo on the Restasis and have no burning or stinging...in fact, it is comfortable.

I do put in a drop of Refresh Celluvisc before I shower, though, as fresh water getting into my eyes hurts and makes them red. The celluvisc puts a filmy shield on the eyeballs that is washed out by the time I'm done with the shower and I'm not painful or red from the tap water.
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coco14
16 years ago
Thanks so much for your informative answer! Using it over 4 days will be great and save me alot....I cover the tip with silver foil, refrigerate(upright in a shot glass as well) and now instead of discarding after 2 days, I'll just use each vial up....still wondering tho....is it dangerous?
Re: alrex....I use it "as necessary" -it's a good allergy drop. Also like Systane.
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woodnymph2_gw
16 years ago
I put the rest of the unused vial back in the box and close it up tight. No refrigeration. I have never, ever had any problem with infections.
As for how much to use, I think we are all different. I feel I have to use a bit more than recommended, and smear it to the outer edges of my eyes. If I do not do this, I notice the difference.
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james-seri
16 years ago
I heard you shouldn't use plugs and restasis at same time. anyone know? or experience ? also, anyone have pain behind your eye from using restasis? thank you. james
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stimpy926
Original Author
16 years ago
No, it's not that you should NOT use Restasis in conjunction with punctum plugs, it's that the mfr. has no documented results from patients using both. Each individual has different results. If you read from the beginning of this thread I state my experience. You can use both. I've never had pain behind my eye from using Restasis, again, a visit to your eye doctor is in order if you're experiencing pain.
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tsund
16 years ago
Thanks so much for the useful Restasis info, etc.

Any other Sjorgren's persons here? Have you had help with the Flax oil/primrose oil?
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vieja_gw
16 years ago
My Dr. recommended Restasis & gave me some free samples. I read the directions & saw it contained ? cyclosporin, an immunosuppressent. It also said it hadn't been checked for persons who had had herpes infections in the eye. Since I have had recurrent eye infections with herpes I was afraid to use the drops! I had had the plugs inserted twice & both sets came out in time & was told by the Dr. that they don't use them much any more? Both my husband & I use Systane drops that don't have that preservative in it that causes our eyes to burn & have bottles everywhere: by the TV's, bedside table, car, my purse, etc.!! Most recent problem I have is intense itching of the eyelids (not allergies) ... drives me crazy!! Dr. said to soak very warm wet clothes over the lids frequently but doesn't seem to help. Any one else have this problem ... what helps?
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woodnymph2_gw
16 years ago
I recently visited my eye doctor and since I have dry eye syndrome, he recommended that I take fish oil and flax seed oil for this.
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kmur4kits_yahoo_com
14 years ago
I have read the messages about Restasis and I have been using it for about 5 months with marginal success. I will have to have a Schrimer's test to quantitate any results.

A helpful tip for you Restasis users: RECAP your vials using the ORIGINAL cap you just twisted off...it fits perfectly and snugly to your vial. Just a helpful hint.

I had my lower punctums permanently sealed shut via a laser procedure in 1995 and they are still shut tight today. Silicone plugs just fell out as soon as I left the doctor's office. I don't know if some docs are averse to sealing off tear ducts permanently, but my doc just came and did it within 10 minutes...easy and no problems except a little scratchiness for a few days as it healed to a super smooth scar. Absolutely no problems with it today.
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william83
14 years ago
I've been using restasis since I got lasik 6 months ago. After refilling my RX 4 times, I've decided to stop. I don't think restasis helped very much but it definitely is expensive.
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stimpy926
Original Author
14 years ago
That's unfortunate william83...lasik surgery is not recommended for people with dry eyes, as it is one of the major side effects. Yea..we have to pay through the nose until the patent runs out.
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3birdnest_msn_com
14 years ago
Wow. This is a topic that I have to weigh in on. I have been battling dry eyes for at least 5 years now. I have gone to several different doctors. One of them put in the permanent punctal plugs. I could not stand them. They looked like miniature nails and I had irritation from them every single day. One fell out, and I went to another eye doctor and had the other removed. They were horrible. I have tried just about everything, including restasis. I was on two drops a day for a year and a half. I eventually noticed some improvement. The prescription ran out, I did not renew. I kept thinking about being on an immunosuppressant like restasis for life? My new doctor has me on FreshKote and put in the dissolvable plugs. I will have to have them replaced in 3 months, but it is way more comfortable than the "nails."
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dja210_yahoo_com
14 years ago
I have used Restasis for dry eye. It did not help me, but I have lower plugs in both eyes. I have Sjogens and have had lasik in my left eye and it is more dry than my right. I have just started FreshKote and it seems to be helping some. Don't know yet how ecpenseive it is. I also have glucoma in both eyes. I am on TRAVATAN for the glucoma.
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faysbooks_gmail_com
14 years ago
I used restasis for several years after having plugs placed in my lower lids, which were very expensive, and then they fell out. I was doing well on restasis but when I went to see a new doctor just recently he changed my drops to Oasis Fresh. I still have three boxes of the restasis that I haven't opened but wanted to see how the Oasis would work before going back. I'm not sure the Oasis is working as I'm having to put more drops daily and even in my sleep when I can't stand the friction in my eyes. Anyway, I'm responding to these messages because I wanted to find out if anyone could use the three packs of restasis that still have not used. As they expire Oct 2011, Feb 2012 and March 2012, I'm not sure that I'll get to them if I keep using the Oasis to see if that works. Let me know if you're interested in one of my packs.
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linnea56 (zone 5b Chicago)
14 years ago
I have dry eye due to taking Tamoxifen, which neutralizes estrogen in the body. I read on another forum about taking fish oil 3 x a day to help. I asked my ophthalmologist, and he said yes, he would recommend it. I started about 5 months ago. It took a while to work (about a month) but it is much better.
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KerseyJoshua_bellsouth_net
14 years ago
I am 28, just had my third child and my dry eyes started when I was pregnant with him. I started using over the counter drops for the dry eyes while pregnant. Thought it was just a pregnancy thing but they continued to be dry after I had him I still use the drops but this past February my eyes got severely dry eyes along with I guess what you would call allergy eyes. At night while my eyes are shut my eyes get the most dry. I wake up and they feel awful and are blood red. I rub them sometimes for some relief then I put some antihistamine drops and artificial tear drops in my eyes along with a cold rag and by morning they are clear. I wear contacts but stay at home with my kids so wear glasses at home but it doesn't matter if I wear glasses for the day or contacts I get the same result at night. During the day I have a little itching and dryness but not as much as the evening and nighttime. I went to the doctor and they gave me the prescription antihistamine drops that I said I put in at night. They are very expensive and I don't think they are helping with the dry eyes just maybe the allergy part. I am taking Claritin and I guess that is helping with the sneezing and the day itching. I thought it was solely allergies but I think it's both it's dryness and allergies. I wouldn't mind trying the restatis. Fay if no one has taken you up on those samples I would like to try them. I'm getting Lasik this summer. Does anyone know if that makes your eyes dryer? I am really looking forward to it being that I have been wearing glasses since the 2nd grade and contacts since the 7th and I'm almost 30. I just need something to help with these dry eyes.
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stimpy926
Original Author
14 years ago
Amy, one of the side effects of Lasik is dry eyes. Unless your doctor feels your dryness is temporary, he/she should know of this.

I hear ya on the inconvenience of glasses since you were in 2nd grade. I was very nearsighted by the fourth grade. I would ask about whether punctum plugs are right for you. Don't ask for Restasis without getting an official diagnoses of Dry Eye Syndrome or Sojourners Syndrome first. Is it only a wintertime dryness problem, or year round?
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KerseyJoshua_bellsouth_net
14 years ago
Paula hopefully when getting Lasik they will give me something for the dryness if it continues. They really just started being super dry this past February when flowers started to bloom and pollen hit the air. Honestly don't remember having this problem in past years. I'm assuming it has to be related to a new allergy. I haven't always had allergies. I have had dry eyes since 09 when I was pregnant with my third child but not nearly as dry now and no itching like they do now. I keep hearing about the plugs but if insurance don't cover them then I prob won't be able to get them considering my husband is the only one that works and we have 3 children under the age of 5. The Lasik has been something I have planned on and saved for years now and will be a great investment b/c of all the years my parents growing up and I have paid for eye glasses, contacts, exams I could have got Lasik 5 times over. It will be great to wake up in the middle of the night when the baby cries and see. I hope my problem gets better. I have eczema too and that is under control so now I have a new problem to worry about.
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LAVERIA_D_YAHOO_COM
13 years ago
I am very skeptical about trying Restasis because I simply do not like taking anything without worrying about the long term effects or immediate side effects. Doctors are telling me that I have dry spots on my eyes but my discomfort is obviously minimal because I didn't even have symptoms. I guess I felt like the doctors were just pushing a product on me. I had been using Lotemax drops for superficial punctate keratitis and optive refresh drops. All I want is my contacts back and to use over the counter drops and maybe some fish oil supplements.

What are the down sides of Restasis and how much will my co-pay be?
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kjrose60_yahoo_com
13 years ago
I got great relief from dry eyes when I stopped using soap on my face. I use products on my face that do not have sodium lauryl sulfate in them. . . like Burt's Bees Facial Cleanser and Mary Kay Timewise 3 in 1 cleanser. That stopped the itching, burning, redness of my eyes.
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benikca_msn_com
13 years ago
Hi, I have severe dry eye from lasik surgery and age. I have had lower plugs for about 7 years and use restasis regularly. I stopped using it for about a year and didn't realize my pugs had both fallen out. It was summer and I couldn't see very well because my eyes were so dry, so I tried the restasis (had some left) and it made a huge difference. Although I don't believe it trains your eyes to make tears, I will probably use it for life. My eye Dr. Said that alot of people remove their plugs with the use of restasis to keep the eye flushed of debris. Not me; but I don't think I would do uppers for that reason.
When I went to a dry eye specialist he told me to take at least 3000mg of fish oil per day and drink lots of water these have also helped a great deal. Hope it helps you.
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maddy_2007
13 years ago
I have used Restasis, gave it over a years try. My eyes burned with it and it just kept getting worse. The cost even with insurance was horrible. I now use the Systane Ultra drops and they are the best drops I have ever used. I also tried the plugs but they just kept falling out.
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pokerlover16
13 years ago
hi all i,m new here and was reading th ru everythin and very helpful here too:))) i,m 54, female, have had hooribe dry eyes for yearssss now,,, i have sjogrens and other muscle auto immune illness too,, i take plaquienil for that.. but my eyeys a lways a badprob,, I HAVE tried all the teras mosly too, and the lotamax, etcc, I
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dreamgarden
13 years ago
Has anyone tried Hyaluronic eye drops for dry eye syndrome? Seems as if it might help.

WebM.D.

"Hyaluronic acid is a substance that is naturally present in the human body. It is found in the highest concentrations in fluids in the eyes and joints. The hyaluronic acid that is used as medicine is extracted from rooster combs or made by bacteria in the laboratory.

People take hyaluronic acid for various joint disorders, including osteoarthritis. It can be taken by mouth or injected into the affected joint by a healthcare professional.

The FDA has approved the use of hyaluronic acid during certain eye surgeries including cataract removal, corneal transplantation, and repair of a detached retina and other eye injuries. It is injected into the eye during the procedure to help replace natural fluids."

A link that might be useful:

www.webmd.com/vitamins-supplements/ingredientmono-1062-HYALURONIC%20ACID.aspx?activeIngredientId=1062&activeIngredientName=HYALURONIC%20ACID
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SharonLA
13 years ago
I didn't read every single reply, so if this is repeated info, I apologize. I developed dry eye during the last year. It progressed to the point I was miserable, in awful discomfort and embarrassed to go out! Very uncomfortable; constantly drenching my eyes.. nothing helped. I remembered something from my nursing days and Googled to find the website below: Richmond Products

The product is "Foam Edged Moisture Chamber" eye patch. It eliminated my dry eye problem about 95%. I only wear them at bedtime, and usually I only wear one (my right eye was much worse). My method is to apply lubricant eye drops, not only to my eyes but directly into the chamber itself. You want a "rain forest" effect inside the chamber. Took 3 or 4 nights to see the total improvement, but helped immediately. I rarely need to use eye drops in the daytime now. Good luck w/ this!

Here is a link that might be useful: Richmond Products
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maryann0625
13 years ago
I used Restasis for a couple years. It was quite helpful in the beginning, but I did experience stinging after application. My ophthalmologist suggested keeping it refrigerated until I was ready to use it, and that made a big difference. After a while, it seemed to lose its effectiveness, and I was annoyed with the side effect of having the whites of my eyes appear red so I stopped using it. My symptoms are worst during the night and first thing in the morning, or when I am doing eye-intensive work, such as reading or working on the computer, The best relief I've gotten from an OTC treatment is from drops called Soothe.

Thanks for the suggestions -- I'm going to try fish oil or flaxseed oil and ask my eye MD about FreshKote.
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josie152
11 years ago
Hi, I am new to the forum. I was diagnosed a month and a half ago with severe inflammation of my eyes. I had been experiencing burning, gritiness, redness, blurred vision for a while. My Opthal. prescribed Restasis, 2x a day, artificial tears, and refresh gel at bedtime. He also recomm. flax oil. Thus far, I am not getting any relief. He did state that it would take 3 months for the Restasis to kick in.
I bought the flax oil, but haven't taken it reg. it made me nauseuous, but I will try again and make sure I take it with my early meals... I am not looking forward to turning on the heat, in my case a wood pellet stove. I must invest in a decent humidifier this winter. I appreciate the input of everyone, it helps. I'm glad I stumbled onto this site, I don't feel so alone with this condition. It is really affecting my quality of life. Thanks for letting me vent (whine) lol!
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dxpaul
11 years ago
Have dry eye syndrome .... Been taking restasis 4 days now. one day it feels great now my vision blurry its not clearing up. Thinking i may be using too much in my eye.. Any advice people????
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JamieHarris1790
10 years ago
Wow what a long thread. Very informative. Question Do you wear contacts? Are those causing your problem.
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schleef
8 years ago
I'm looking for help! A friend of mine just suggested I might have dry eye. My eyes are watering, irritated and often red and I have zero allergies. I've been reading about Restasis but I'm not willing to have any side effects with medication. Has anyone tried fish oils or something more natural?
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User
8 years ago
Schleef the last entry on this thread was from 2014. Probably your question would be answered quicker if you started a new topic. I did have to chuckle about using fish oil. I would like to suggest that you try it in your eyes to see what you think but please do not.

Better yet find out for certain and go to an eye doctor.
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smaczko
8 years ago
You can use the lid (top that you twist off) to insert into the vial to seal until the next application. The vial stores nicely in an empty prescription bottle with a twist lid.
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Anyone using Restasis for dry eye syndrome?

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