Hi everyone. My doctor finally prescribed the Restasis for me. Now that I have read the side-effects, one being lymphoma...I am not so sure so I have not started the Restasis yet....
I found an eye ointment by Systane. The lubricating drops just are not cutting it. My lids are stuck shut in the AM when I wake. Talk about pain.
Anyway, the ointment is helping some, still...I DREAD waking in the morning because I know my eyes are not going to be normal
IS there anything over the counter that anyone here finds REALLY helpful?
My Ins. won't pay for this medication anymore... that my doctor wanted to to try. I posted about it, but no-one responded, so I am thinking no-one knew anything about it, which is okay.
I am SO DESPERATE! So if you have any suggestions will you please, please share with me. I guess I need to see an eye doctor soon as well.
All that I can offer,is my complete empathy,as to your waking up.I was waking with double vision for an hour or so,and I hated to go to sleep.I would pray before I slept,and it finally got better. So sorry,but you are not alone.I will say a prayer for you this evening. Bill
Empathy goes a long way Bill so I sincerely thank you!
I hope someone will be able to give me a solution that has worked for them. This is really hard
I am so glad that your double vision got better. That had to be very hard to deal with.
Thank you again..
Madison
I am on occular steroids in the process of getting Restasis, so I can understand your concerns. I just wanted to say that I have found that just one type of drop may not do the trick. You may need more than one kind or brand of artificial tears to help. Plus, a humidifier at night definitely helps me. I have not tried the evoxac but am on the generic of salagen. It really helps my mouth but not my eyes. Of course, I don't have Primary Sjogren's, only secondary sicca so my reactions may be dfferent than yours. Also, I use paper towels or tissues moistened with water, like a compress, to dissolve the eye glue in the am. I happen to keep distilled water in my bedroom for various other uses, like for the humidifier and such, and now just keep it where i can reach it from my bed with my eyes shut. lol.
gd...thank you. I AM going to get a humidfier for sure now. I have been told that it may help me. This gets SO old doesn't it? I tried, Blink for eye lubrication and it was good at first but I had to go back to the systene. I have been drinking a LOT more water. God I am going to float outta here soon! LOL
iT IS ALWAYS SOMETHING! I get tired and worn down and I know you guys do too.
Thank God we can lean on one another.
Thanks again..
Madison
Hi Madison. I have the same stuck eye problem upon waking. Takes about 5 minutes to get them open. But so far I have no pain. Have been using Restasis about 2 months now and it may be helping slightly but its hard to tell. My tear production is 1L and 3Rt while normal is 10 to 15 I think. My Dr. seems to have given up! I've tried about 4 or 5 other drops and ointments but none were effective. Like you, I don't know what to do next.
Hi Ed, it is just awful for us. I don't know if the doctor's have a real answer, except to hope that something will work for us. I am about ready to research some "natural healing" things...maybe there is something out there for us? And if I find anything, I surely will let everyone know here. We just cannot give up.
I heard that they could put plugs in our eyes to help with this problem. So far, that just is not something that I think I want to venture into.
Madison
I have been on Restasis for over a year and still was having terrible problems with dry eyes so my opthamologist prescribed FreshKote eye drops along with the restasis. It has helped tremendously. Someone else mentioned salagen for dry mouth. I take it twice a day and it definately helps me too. Hope this helps.
Hi cricket...thank you. Is that FreshKote over the counter or a prescription?
Did you have any side effects with the Restasis? I have just read such horrible things that it scares me
Madison, my eyes produce so few tears (1 to 3) that Dr. doesn't think plugs would help me. If your tear production is better they may work for your eyes. The plugs are inserted into the tear ducts that carry the tears away from the eyes and hence the moisture is retained in the eye. I think they can be removed if they don't work but check with your Dr. God bless, EdTemecula
Hi Ed, I know when the eye doctor put that paper or whatever it is in my eye, to try to produce a tear, mine was bone dry. NOTHING?This was about 4 years ago and I don't remember what he said, except there was nothing on the paper. So if that indicates what I think it does then maybe the plugs would not help. They were mentioned by another eye doctor. I lived in Maine for a short while so I had to switch eye docs. due to a new Ins. that I had.
I DID go yesterday and I bought this wonderful humidifier. I invested in one that does the whole house. I woke this morning and I could actually open my eyes~ They were gooey from the bliss gel that I tried yesterday, but a warm cloth took care of that.
This whole thing really scares me. I have suffered such eye pain, and I know you guys have too.
HOPEFULLY this humidifier will help. The reading BEFORE using it meant that the humidity in my apartment was below 20. That is not good. I am running it now to keep the humidity right around 55. I bought extra filters and the water treatment and a gauge that lets me know the humidity in my bedroom as well. Home Depot was sold out of everything, end of season they said. SO off to reliable WalMart, which I am not fond of. I tell my friends that I am forced to go there. Aren't we all though...
OH and for a giggle. I get home and see that the wheels were not in the box. I go ALL the way back to WalMart and come to find out, the wheels were UP IN THE FILTER? Who would of known. IF anyone buys a Sunbeam Humidifier, and you cannot find the wheels, check UP in the filter before returning to the store. lol
Madison
Last edited by Madison104; 02-13-2010 at 04:18 AM.
Hello again Madison, That's good news about the humidifier, please let me know how things go.
I wonder if our diet or activities may contribute to the problem? Maybe we can compare notes. My wife sees to it that I have a good diet and take a lot of vitamins and supplements. However, I do drink 4 to 5 cups of coffee a day and I do spend 3 to 4 hours a day at the computer. My wife thinks these activities may be contributing factors to our problem.
Are you a coffe drinker? Did your Dr. mention any thing about diet or activities that we should avoid? Bye for now, EdTemecula
Hey Ed, YES I am a huge coffee drinker, although it is decaf. Still, I have wondered if that is making my situation harder on me? The humidfier IS helping for sure. I will keep you posted. I am still using my eye ointment at night, but when I try to open my eyes in the morning, I have been been able to for the last 2 mornings! I don't want to jinx myself......but I think it is helping. I have increased my water intake and I live on salmon mostly with veggies. I would say my diet is really, really healthy.
I cannot do much for exercise with all of my arthritis. Cleaning house is my workout! lol
I wonder if the computer does contribute to our problem..Hmmmmm maybe your wife is on to something. I think I will research that a bit.
One thing I forgot to mention in my earlier post...my eye doctor suggested trying fish oil with Omega 3 capsules twice a day orally to help with dry eyes in addition to the Restasis and FreshKote eye drops. My eyes are doing so much better although I still have occasions when I wake up with my eyes dry and I still use Systane drops on occasion as needed. My eye doc has mentioned the plugs before to me but I don't want to do that unless nothing else works. I had ulcerations on my corneas when I was first diagnosed with Sjogrens because my eyes were so dry. So far they have healed with only one small scar and have not returned.
As a side note...I am not a coffee drinker at all but do drink a few diet pepsi's a day (1-3) both with and without caffeine.
Glad the humidifier is helping.
Cricket
Last edited by cricket183; 02-16-2010 at 01:59 AM.
Hi again I eat salmon at least 4 times a week, simply because I love it. I actually have some cooking right now, so I am thinking that I am getting plenty of the omega 3. HOPEFULLY......
This morning I could open my eyes again. They were stuck a wee bit, but NOTHING like before the humidifier. I am still using the systane lubricating salve, instead of the drops now, even during the day.
I need to get to an eye doctor very soon. I am worried about some damage again to my cornea. Three years ago when this happened I did have an abrasion on my right cornea and I know this is not good.
Again I appreciate all the feedback. It really helps.
Madison
I couldn't use Restasis drops. What helps me the most is REFRESH PM at night it softens the hard stuff in your eyes and makes it easier to deal with when u wake up. I also use BION TEARS it helps some better than anything else I have tried. Nothing stops it but these help me more than anything else I have tried and I have tried alot.
I forgot to mention that the eye doctor that I saw says there is scarring on the cornea from the past when I had that abrasion from my eyes being so dry!
It is really important that we keep our eyes as moist as we can!
I know when the eye doctor put that paper or whatever it is in my eye, to try to produce a tear, mine was bone dry. NOTHING?This was about 4 years ago and I don't remember what he said, except there was nothing on the paper. So if that indicates what I think it does then maybe the plugs would not help. They were mentioned by another eye doctor. I lived in Maine for a short while so I had to switch eye docs. due to a new Ins. that I had.
