Restasis- Need Opinions

[MommyandMe81]

Hi Everyone,

This last week I decided to try Restasis again. I initially never gave it a real go because I did not want to get used to it- or the $400/month cost of it. I vowed to work with natural options versus fancy drops that stung!! A co-worker of mine, with very subtle dry eye was nice enough to give me 4 boxes of Restasis and so i thought why not try again? Now I remember- they sting! Yes, it goes away rather quickly but now I find that my regular eye drops (preservative free) are stinging as well and my eyes are now red. I have somehow managed to skip the redness for quite some months.

I am tempted to say that Restasis is not really helping and on the contrary stressing my eyes out. Any suggestions? Should I quit now or keep going with it? i know everything is not for everyone but I wanted to give it a fair shot before completely ruling it out. Is one week enough time to call it quits?

Thank you!

[pythonidler]

One week definitely does not seem like enough time.

For me, I noticed a slight improvement after 2-3 weeks, but other people might take much longer to see an improvement (i.e., several months).

One thing to note about the Restasis: You can make the 60 vials that come in a box last much longer than a month. The instructions tell you to put a drop in each eye and then throw the vial away, but there is enough medication left in the vial to last you 2.5 - 3 days, I find. Just re-cap the vial and/or set it upright against your bathroom mirror. I've never had a problem with bacteria contaminating the vial after I opened it. Note this may be changing however; Allergan, the manufacturer of Restasis, has created Restasis Multidose, a month's supply of Restasis contained in a single bottle. Eventually, I think they will stop manufacturing the vials and produce only the Multidose version.

One last thing I want to say is that for most people (especially people on this board), Restasis is not a magic bullet. It alone will probably not relieve all of your symptoms. Instead, think of it as a tool in your arsenal against dry eye - it is one of many things that can help you a little. Your job should be to experiment with other things that can help you. Reading this message board is certainly a good start for ideas.

[MommyandMe81]

Hi Python,

Thanks for the opinion. Did you have the burning and red eyes as well when you started the Restasis? I remember I had the same reaction to it the first time around and I'm scared I'm hurting my eyes instead of making them any better- especially if now they are burning with the regular drops. That's my dilemma today. I do use the vial sparingly as you suggested. Only 2 drops in each eye per day. It usually lasts me 2 days at least.

As far as experimenting- I definitely have been for months now. I am taking fish oil, flaxseed oil, hemp oil, doing hot compress/massages, humidifier, green tea w/ lemon, etc. I've tried castor oil which worked for some time but no longer does. I wanted to give the Restasis a fair shot, started thinking maybe my co-worker having all those spare boxes was a blessing of some kind, but I'm not liking it at all already.

[pythonidler]

Yeah, I have the burning sensation every time I put a drop in. Not sure why that is exactly. I think as long as it only lasts for 10-15 minutes, you're probably fine.

It sounds like you're off to a good start in terms of taking fish oil and doing hot compresses.

I haven't seen any of your previous posts - have you been diagnosed with tear deficiency or MGD or both?

[MommyandMe81]

MGD. I have been to 2 eye doctors. The first one, was no expert at dry eye. He gave me some drops, told me about the compresses and sent me on my way. The second one was a dry eye specialist. He explained it in a little more detail, telling me it was MGD and it was a mild case so we would find ways to prevent it from getting worse. He put me on Restasis and some steroid drops (which I could not afford even with insurance) and tried to set me up with a "trial sample" bag of goodies for $300. Needless to say I never went back. It seemed alot more geared towards making money than actually helping. I have another appt on 12/30 with another specialist. I dont know why but I'm not hopeful with them either. I feel like it's going to be the same- drops and massages but I would like to have someone give me a little more info on where I am in terms of tear evaporation and those things. I would also like to get a prescription for some glasses to help with computer strain. I think those would help greatly.

So thats when i started looking at alternative remedies. I had a great few months in the summer, thought I had actually conquered this but the Fall kicked in and went back to day 1. Today is actually a pretty bad day. I feel them super dry and have pretty bad headache. I am wondering if it might be hormonal related as well. I am a day away from my monthly cycle and am feeling pretty crappy. Last month it was the same exact thing. I guess I should get blood tests and what not to rule other things out ha? I assume those would be with my general practicioner.

Thanks for listening. How about you? What is your case?

[BoneDry]

MommyandMe81

Hang in there. That is why we need more specialists on this forum, well education and knowledgable physicians to GUIDE us. There are very few that know how to diagnosis DED, but they claim they do. Thats the problem with modern day medicine. If it can't be solved with a "pill" they do not know.

Diagnosis is everything. You may even have to travel for the first diagnosis and get a local doctor to "help" with the treatment.

Even though you have been told you have MGD, drop such as Xiidra and Restasis can help with inflammation. However, those drops do take time to work, Restasis longer than Xiidra I hear.

I'm just starting Xiidra and I have MGD. I'm also doing IPL with Dr. Toyos, and that takes 5-6 treatments to get the glands working again I was told.

There is no one "silver" bullet. You will most likely have a combination of treatments.

[pythonidler]

MGD. I have been to 2 eye doctors. The first one, was no expert at dry eye. He gave me some drops, told me about the compresses and sent me on my way. The second one was a dry eye specialist. He explained it in a little more detail, telling me it was MGD and it was a mild case so we would find ways to prevent it from getting worse. He put me on Restasis and some steroid drops (which I could not afford even with insurance) and tried to set me up with a "trial sample" bag of goodies for $300. Needless to say I never went back. It seemed alot more geared towards making money than actually helping. I have another appt on 12/30 with another specialist. I dont know why but I'm not hopeful with them either. I feel like it's going to be the same- drops and massages but I would like to have someone give me a little more info on where I am in terms of tear evaporation and those things. I would also like to get a prescription for some glasses to help with computer strain. I think those would help greatly.

So thats when i started looking at alternative remedies. I had a great few months in the summer, thought I had actually conquered this but the Fall kicked in and went back to day 1. Today is actually a pretty bad day. I feel them super dry and have pretty bad headache. I am wondering if it might be hormonal related as well. I am a day away from my monthly cycle and am feeling pretty crappy. Last month it was the same exact thing. I guess I should get blood tests and what not to rule other things out ha? I assume those would be with my general practicioner.

Thanks for listening. How about you? What is your case?

I have both MGD and aqueous tear deficiency. A year after my first symptoms I was diagnosed with MGD, and two years after I was diagnosed as aqueous deficient. My eyes only got worse while I was going to doctors with insufficient knowledge of dry eye. Thus, my first advice to anyone out there with dry eye is to find someone who can accurately diagnose you ASAP.

Blood tests would be good to rule out Sjogren's Syndrome. Although if you got diagnosed with SS, the treatment wouldn't really be that different from what you would do for chronic dry eye.

The doctor who diagnosed you with MGD - did he take images of your meibomian glands? As the saying goes, pictures are worth 1000 words. Meibography can also reveal whether you have scar tissue over your glands - in which case probing would be a good option for you.

If you haven't got them already, you should try to get some quantitative measures of your MGD at your next appointment, including:

• Tear break-up time (how long it takes your tear film to evaporate after blinking; higher is better)
• Tear osmolarity
• Approximate number of glands producing oil on each lid (doctor should use a tool shaped like a USB flash drive to press against your eyelids and express the glands)

Also consider asking for a Schirmer Test, if you haven't got one already. A Schirmer Test measures your aqueous tear production. A small strip of paper is put over your lower lid, and you close your eyes for 5 minutes. The more tears you are producing, the more the strip will be soaked with your tears. A normal value after 5 minutes is >10 mm of soak. Anything less than 10 mm is considered aqueous deficient.

Try to find a specialist willing and able to do these tests for you. If they can't, they're probably not worth much as a dry eye specialist. In the meantime, I would say continue doing what you're already doing. Fish oil and warm compresses are good for any case of MGD. I personally use about 2000 mg of omega-3 per day (Nordic Naturals Ultimate Omega).

[pythonidler]

One thing I should add is that if your MGD is severe enough, you may want to consider Lipiflow or IPL treatments. Personally I would recommend IPL, as Lipiflow seems to be more expensive and less effective. IPL is much harder to find, however. The company that manufactures the Lipiflow system has been marketing it to virtually every eye doctor's office in the country, so there are a lot of doctors that can do Lipiflow.

A treatment of IPL can cost anywhere between $250-$500 per session, whereas Lipiflow for me (back in 2014) cost $750 per eye per session. If it turns out you need IPL or Lipiflow, you will probably need to do at least 1 IPL or Lipiflow treatment per year to manage your MGD.

Again, you may not need to do either of these treatments - just something to keep in mind.

[MGD1701]

Hi pythonidler
Thanks for sharing great tips.

aqueous deficient: What are treatment plans your dr recommend for this?

Thanks!

[pythonidler]

Hi pythonidler
Thanks for sharing great tips.

aqueous deficient: What are treatment plans your dr recommend for this?

Thanks!

The two things that helped me for aqueous deficiency were Restasis and serum tears, although lately my Schirmer scores have gone down some.

[MGD1701]

Thanks. Shirmer scores has gone down = get worse??

Is it correct to assume that if one has aqueous deficiency has Sjorgen, or NOT necessary?

[pythonidler]

Thanks. Shirmer scores has gone down = get worse??

Is it correct to assume that if one has aqueous deficiency has Sjorgen, or NOT necessary?

Yes, higher Schirmer scores are better, because your eyes are producing more tears.

Sjogren's causes aqueous deficiency, not the other way around. But you can be aqueous deficient and not have Sjogren's, like I do.

[MGD1701]

Sjogren's causes aqueous deficiency, not the other way around. But you can be aqueous deficient and not have Sjogren's, like I do.

That is interesting to know.

[okhuskerfan]

Hi Everyone,

This last week I decided to try Restasis again. I initially never gave it a real go because I did not want to get used to it- or the $400/month cost of it. I vowed to work with natural options versus fancy drops that stung!! A co-worker of mine, with very subtle dry eye was nice enough to give me 4 boxes of Restasis and so i thought why not try again? Now I remember- they sting! Yes, it goes away rather quickly but now I find that my regular eye drops (preservative free) are stinging as well and my eyes are now red. I have somehow managed to skip the redness for quite some months.

I am tempted to say that Restasis is not really helping and on the contrary stressing my eyes out. Any suggestions? Should I quit now or keep going with it? i know everything is not for everyone but I wanted to give it a fair shot before completely ruling it out. Is one week enough time to call it quits?

Thank you!

With insurance I was charged $400/month. I found an online Canadian pharmacy which sold it to me for $270 for a 90 day supply. Was a legit outfit as they required the original script.

At the end of the day restasis did nothing to help my symptoms. I was on it for 18 months with no difference.

[Guest]

Can I get more than one dose from a single dose container?