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Old 04-10-2012, 05:07 PM   #1
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sjogrens dry eyes

I have very dry eyes and saw the Opthamologist today. He prescribed Restasis. We talked about causes and Sjogren's disease came up. I have no dryness of the mouth so although I do have some symptoms of autoimmune disease (blood work shows inflammation) I did not think of Sjogrens as a possibility. He told me that with Sjogren's you could have dry eyes without the dry mouth. Has anyone else heard of this??
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Old 04-10-2012, 06:04 PM   #2
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Re: sjogrens dry eyes

I have just been diagnosed with sjogren's, so i am definately new this, but have had symptoms for over 5 yrs. The last piece of the puzzle was a dry mouth. My tongue actually swelled and was very painful. Still no Dr put it together, and i'd seen 41 diff drs over the yrs. It started with sinus and eustachian tube problems, weird body inflammation that would come and then just dissapear, blurry vision, gynecological dryness and pain, constant diarrhea, stomache problems, etc. I obviously had dry eyes, but to me, it was blurry vision. I was told i was getting old, (i'm only 48), Utah is dry,etc, all valid reasons for my problems. But when i put them all together, i finally asked for a blood test, it was negative, so i asked for a lip biopsy, and it was positive. I knew blood tests were not always valid, and i had all the other symptoms, so to me, it made sense. Plus i had blood tests in the past with an extremely high SED rate, but the dr had no answer for me. I also am on Restasis and Salagen to stimulate my saliva glands. But i had to ASK for a tear test, just like the lip biospy. I was told i barely have any tears. Everyone is different. I'm actually glad i had a dry mouth, it finally gave me an answer to feeling like a freak with all my weird symptoms over the yrs. It doesn't all happen at once, just be aware of it. I had never heard of sjogren's before my dry mouth. I had been told i'd been tested for ALL auto immune diseases. Sjogren's is a completely diff test. I hope u don't have it, but at least u will know the symptoms, and don't be afraid to ask for any test if u feel u need it. I wish u the best.

 
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Old 04-10-2012, 08:42 PM   #3
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Re: sjogrens dry eyes

Thank you for your quick response. Right now I hope that the Restasis drops work. The Doctor says they only work for 50% of people. The drug is not covered so I have to pay for it and it is pretty expensive. I will be trying it for six weeks because the Dr says that is how long it take to work. If at the end of that period I am not getting any benefit I will discontinue use. How much improvement have you seen since using it. Right now I can't read for more than 15 min before I have to use drops so any improvement would be great.
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Old 04-10-2012, 08:52 PM   #4
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Re: sjogrens dry eyes

Quote:
Originally Posted by pooby View Post
I have very dry eyes and saw the Opthamologist today. He prescribed Restasis. We talked about causes and Sjogren's disease came up. I have no dryness of the mouth so although I do have some symptoms of autoimmune disease (blood work shows inflammation) I did not think of Sjogrens as a possibility. He told me that with Sjogren's you could have dry eyes without the dry mouth. Has anyone else heard of this??
i had dry eyes for 6to 7 years before i developed dry mouth. tried the plugs in my eyes and they fell out, tried restasis, but no longer have medical, so now i'm using a new one that gives me some relief and it's over the counter. it's called visine, enduring moisture. try the restasis...it helped me for a while, but i eventually even lost almost all of the mucus in my eyes too. i find this over the counter one isn't too bad. gives me some relief anyway. all the best.

Last edited by boobootwo; 04-10-2012 at 08:54 PM. Reason: mispell

 
Old 04-11-2012, 07:20 AM   #5
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Re: sjogrens dry eyes

I just used the drops for the first time this morning. Had my husband do it because I didn't want to waste a drop. The cost is too high. After he put the first two drops it we saw that there is quite a lot of medicine remaining in the vial. We put the cap back on and will use two more drops tonight. The manufacturers says to discard the remaining medicine but the cap fitted firmly back on top. This stuff is expensive and for now I can't see us throwing it out in the garbage. Did you discard each vial after using just 2 drops? By the way I found that it did not sting at all. The doctor advised me to put in Refresh drops 15 minutes prior to use to help with the burning pain and I was pain free.
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Old 04-11-2012, 08:21 AM   #6
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Re: sjogrens dry eyes

my dr told me to put the cap back on and use it again, that is what he does, said its TOO expensive to waste! good luck

 
Old 04-11-2012, 08:41 AM   #7
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Re: sjogrens dry eyes

Quote:
Originally Posted by pooby View Post
I just used the drops for the first time this morning. Had my husband do it because I didn't want to waste a drop. The cost is too high. After he put the first two drops it we saw that there is quite a lot of medicine remaining in the vial. We put the cap back on and will use two more drops tonight. The manufacturers says to discard the remaining medicine but the cap fitted firmly back on top. This stuff is expensive and for now I can't see us throwing it out in the garbage. Did you discard each vial after using just 2 drops? By the way I found that it did not sting at all. The doctor advised me to put in Refresh drops 15 minutes prior to use to help with the burning pain and I was pain free.
i too, would use the full vial. think i got 2 full days of use in each vial. so, a total of 4 drops in each eye. my doc said the same thing, but i wouldn't keep it any longer than 2 days since they're preservative free.

 
Old 04-14-2012, 01:26 PM   #8
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Re: sjogrens dry eyes

I have CVID and rheumatoid arthritis. Recently I learned my RA meds have caused glaucoma, dry eye disease, and cataracts. I had such bad eye pain I needed strong painkillers. I was started on restasis and a glaucoma eye drops. For weeks I needed to stay in a dark room with my eyes closed, listening to TV. At first I thought my eyes were worse and needed a change in prescription. That's when the other stuff was diagnosed. It took a month for the restasis to start working and the pain and tired-eye feelings are mostly gone although sometimes they ache and I need to rest my eyes in a dark room. This has been terrible and has made me feel miserable. Thankfully it is more tolerable now. I wish you luck with this. Feel free to ask me any questions you might have. --NellieNunu

 
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