My eye doc has prescribed Restasis for my dry eyes caused by Sjogrens. I’ve looked it up, and seemingly Restasis only works for 15% of patients and it has some nasty side effects. Anyone else have experience with it, or more references about its effectiveness that I can read? As of now I’m reluctant to try it.
I tried it off and on for a few months for my dry eyes (not related to Sjogrens). My eyes didn’t really benefit and what helped most was adjusting a medication I was taking daily whose side effect was dry mouth (and for me dry eyes). My doc and I agreed I could try taking it MWF, and that helped tremendously, as well as a salmon oil capsule taken by mouth daily. My relative the ophthamologist suggested the plugs for tear ducts but I declined.
Quote from my dad who is an optometrist: “It works, stings like the dickens, and takes about two to three months to work. And is not cheap.”
I followed up by asking about the percentage of people who have experienced results that you referenced above. Currently waiting for a response to see if he has more details to provide. Perhaps those that didn’t see results were not using it long enough?
I used it for about 4 months and was supposed to see results within that time frame. There are just quite a few who never have good results or results any better than eye drops such as Blink and others. Both my optometrist and relative ophthamologist admitted that many do NOT benefit from Restasis. There is a coupon that if you buy 3 months or something, you get one month free; I believe it’s on their website–check it out if you are going that route. Our insurer did pay for it, so my copay for it was fairly reasonable, but still opted to change Rx by reducing frequency of the other Rx (with MD blessings) and discontinued Restasis and eye drops.
Happily the Rx change was more effective than anything else I tried.
Not quite Sjogrens, but another auto-immune disorder – my dry eyes were really helped by several times daily using the warm (microwave warmable) moist eye compress Thermalon.
One friend of mine swears by Restasis and says it’s the only thing that has worked for her. Anecdotal, I know.
I used it for two years after my Lasik surgery and was never sure it did much. I take sinus medicine that dries them .
I also got tear duct plugs. I “cried” for a month, then back to dry eyes. Now I just carry Similasan over-the-counter drops.
I have Sjogren’s and I took Re stasis for well over a year and it did nothing. I take Evozac now and it helps with both dry mouth and dry eyes. I also take fish oil and flaxseed oil and those make a big difference for my eyes. I used to use eyedrops a lot but now I hardly ever use them.
How much fish oil and flaxseed oil do you take? I also have sjogrens and the dry eye is getting worse. OTC drops are getting less helpful and I’d like to try something else before resorting to prescription drops, which may not be very helpful anyway.
I guess I’m one of the lucky ones. I’ve been on it for at least two or three years and it has worked great for me.
I’ve taken fish oil (4 high dose capsules a day) for years; it helps with a lot of other symptoms. I forgot about that. Also run a humidifier.
D has punctal plugs, and they’ve helped her living in such a dry area.
I had one of those coupons and made my 30-day supply last 4 months by using each single dose vial 4 times. It seemed to be helping somewhat. When I went to get a refill the pharmacy said my copay for a 90-day supply would be $800. Even extending the supply to last a year, that was more than I was willing to pay. So now I just live with it as best I can.
Wife and I use it and it works for both of us. Have been using it for years and we do get 2 uses each from the vial.(it has 8 drops). It does smart sometimes specially when I don’t use it for a few days.
I had no success with it. What I have found that seems to help (tho not 100%) is Systane overnight therapy gel - I use it exclusively at night and it seems to do the trick until around mid-day the next day - not unbearable - but what I really notice is that if I don’t use it the dryness is far worse all the time. I buy mine through Amazon.
My Googling indicates that Restasis works for people with inflammatory eye disease. But I don’t have inflammatory eye disease, I don’t think-- the issue with Sjogrens and eyes is decreased tear production. I don’t think that’s the same as inflammatory eye disease.
Anyway, I’m going to talk to a different doctor. If there’s a decent chance the drug would work for me, I’ll try it.
I have Sjogren’s. I tried Restasis for about a year and a half and it didn’t do anything for me. (But neither did it sting or burn.) I use Refresh drops during the day and Mura 128 at night, based on a CC-er’s recommendation. My eye doc doesn’t like my using the Mura 128; he wants me to use the Refresh ointment instead. IME, the Mura 128 is vastly better.
I’ll try the fish oil, as a few of you have suggested.
I use the Refresh ointment at night. I’ll talk to the doctor about whether it would make sense to switch to Mura 128. I often end up putting drops in my eyes in the middle of the night, if I wake up; I’ve become expert at putting in drops in my eyes in the dark.
shellfell, This is the fish oil:
I take one capsule in the morning and one in the evening (they recommend 4/day but I’m also taking flaxseed oil).
This is the flaxseed oil:
http://www.amazon.com/dp/B0009ET4LS/ref=sr_ph?ie=UTF8&qid=1420835165&sr=1&keywords=barleans+flax+oil
I take one in the morning and one in the evening.
Thanks for the links.
I also use Refresh drops during the day. I had used the ointment at night, but found that it wasn’t working as well as it used to. I haven’t used it in awhile, so I’ll give it another try, especially now that the air is so much drier.
I got plugs. They work great. They put in temporary ones first, to see if they bother you, then they put in plastic ones.
My near vision has improved a lot, reversing the “old age” poor near vision that I started having.
Also antihistamines can make your eyes dry.