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Old 08-22-2010, 05:50 PM   #1
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Dry Eyes- Sjogren's Sydrome

After being diagnosed with Secondary Sjogren's Syndrome, I have tried Restasis, Punctal Plugs, Eye Gel, and Eye Drops, but none of them relieve my dry eyes.

As the day wears on, my eyes get so dry that my left eye wants to shut closed. Has anyone ever had severe dry eyes? If so, what was your treatment?

Thank you

 
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Old 09-13-2010, 03:03 PM   #2
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Re: Dry Eyes- Sjogren's Sydrome

Hi bxq,

How long have you been on the Restasis? It literally took over six months for me to see a difference. I'm also not looking forward to the Fall/Winter when the dryness gets real bad. How often are you using the drops? When at my worst I had to put them in every couple of hours. The punctal plug didn't do much either. I also drink a lot of fluids to keep hydrated. I hope you can find some relief soon!

Angie

 
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Old 09-13-2010, 08:56 PM   #3
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Re: Dry Eyes- Sjogren's Sydrome

I use the restasis in the morning and at night. It does take time to work. My doctor told me it is an anti inflammatory. During the day I used Refresh. I was told it is like a lotion. The dr advised me to not use both drops within 15 minutes of each other. At night when the air is so dry or we have the ceiling fan on, I will use the overnight eye cream. It makes a huge difference now. Before I just wanted to scratch my eyes out they hurt so much.

 
Old 09-14-2010, 01:05 PM   #4
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Re: Dry Eyes- Sjogren's Sydrome

I have the same issue with a fan at night. I actually will wear one of those fabric face masks over my eyes at night to keep the dry wind off them. It seemed to help.

 
Old 10-06-2010, 10:42 AM   #5
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Re: Dry Eyes- Sjogren's Sydrome

hi bxq- Ive tried everything you mentioned as well. Other than keeping hydrated and avoiding air currents im also taking flaxseed oil capsules twice a day, I use Thera-tears preservative free vials four times a day, I also use a warm moist compress every morning that i can to open up the oil glands. My eyes feel dry about 80% of the day, its always on my mind and are constantly red.

 
Old 10-07-2010, 11:38 AM   #6
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Re: Dry Eyes- Sjogren's Sydrome

Quote:
Originally Posted by Angie10 View Post
Hi bxq,

How long have you been on the Restasis? It literally took over six months for me to see a difference. I'm also not looking forward to the Fall/Winter when the dryness gets real bad. How often are you using the drops? When at my worst I had to put them in every couple of hours. The punctal plug didn't do much either. I also drink a lot of fluids to keep hydrated. I hope you can find some relief soon!

Angie
Angie,

I have been using Restasis twice a day for over two years. Along with eye drops I tried Lacrisert eye inserts. These are prescribed and expensive. Most of the time they work for six or seven hours. Then my eyes get so dry and itchy the eye drops are used until bed time.

I find SS a very expensive condition to treat.Unfortunately, Secondary Sjogren's Syndrome does not have much in the way of research right at the moment.

Good luck with your eyes. Please feel free to send along a mesage.

bxq

 
Old 01-20-2011, 02:03 PM   #7
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Re: Dry Eyes- Sjogren's Sydrome

Quote:
Originally Posted by bxq View Post
After being diagnosed with Secondary Sjogren's Syndrome, I have tried Restasis, Punctal Plugs, Eye Gel, and Eye Drops, but none of them relieve my dry eyes.

As the day wears on, my eyes get so dry that my left eye wants to shut closed. Has anyone ever had severe dry eyes? If so, what was your treatment?

Thank you
bxq,
I know you posted months ago but I wanted to help if you had not found relief yet. I have tried all of the treatments mentioned and still did not get any relief. I even tried Lacrisert a pellet that is supposed to melt in your eye to provide all day relief, my eyes are so dry the darn things would not melt, which caused more irritation. You may want to talk to your doc about it; some people have had great results. I use the eye gel GenTeal Severe Dry Eye Relief from Novartis during the day, (I should by stock in the company) and a night time eye ointment at night. But, most importantly I use a humidifier at night.
Hope this helps,
Robin

 
Old 01-21-2011, 08:53 AM   #8
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Re: Dry Eyes- Sjogren's Sydrome

Thanks a lot for the message. I too use Laciserts each day. Sometimes they feel like glue on top of my eyes. They are quite expensive, too.

I read about a procedure (reconstructive eye surgery) where the doctor can close the tear ducts permanently. Do you know anything about this type of procedure?

Do you find Lacriserts to stop working after about 6 hours of being in the eye? By mid-afternoon my eyes become very dry. That's when it's time for 15vials to get me through the rest of the day. That too can be expensive.

Q: Is the Novartis Genteal Gel the one they sell OTC or do you need a prescription? At bedtime I use Genteal Gel.

Have a nice day,

bxq

Last edited by Administrator; 01-29-2011 at 05:02 PM.

 
Old 01-21-2011, 09:46 AM   #9
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Re: Dry Eyes- Sjogren's Sydrome

Hi bxq

I was unable to continue using the Lacrisert. I too would use drops with them, but they just were a gummy mess that just irritated me. I even tried cutting them in half, which I read about someone doing on another board. This might have worked but I couldn’t get a straight cut and the rough edge irritated even more, they need to come out with a smaller faster melting version for me to try them again.

As far as the permanent punctal closure, all I know is there are different types of procedures: Diode laser, Argon laser and cautery. You should discuss the differences with you doc. I have very small punctum and the plugs are staying put, although I need to have the upper ones done but because mine are so small it hurt quite abit when the lower ones were inserted, but as my doc said they won’t be coming out, although maybe I should consider the surgery, at least there is anesthesia.

And, it sounds like you are using the same Genteal Gel that I am OTC. The box has a red background where is says Severe Dry Eyes, and it’s in a little tube. I know it is a little more challenging to use during the day, I have it at my desk at work and have a compact mirror so I can see what I’m doing. And I use the ointment type that really blur your vision when I go to bed, no specific brand just whatever I have a coupon for or that is on sale.

Have you tried a humidifier? It has been very helpful. I got one at Target for under $30, the cool mist type. I almost gave up using it after the first week, but I thought I have nothing to lose. After about a month I noticed I wasn’t waking up two or three times a night to put drops in my eyes. When I do wake I am still very dry. And, most nights I don’t make it thru the night, but only awaking once is wonderful.

Robin

 
Old 03-12-2011, 06:53 AM   #10
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Smile Re: Dry Eyes- Sjogren's Sydrome

My eye's are like that all the time. I am using three different eye drops daily and it does help me get through the day. I just went to the eye doctor and she check my eyes and said there are scratches all across both eye which is caused by the severe dry eye.

I use a regular artificial tears eye drop when my eyes start feeling like sandpaper, then Soothe XP-this one is very think and makes you vision blurry for a few seconds and i use it about 2 times a day, sometimes more, the last one is Systane Balance-this one I use a minimum of 4 times a day. I mean this combination of eye drops help me some, but some is better than constantly feeling like I have sandpaper in my eyes and feeling like I needed to keep my eyes closed. Since I am in school right now I do a lot of reading on the computer and books and I have to blink a lot and after a couple of hours my eyes are so dry it physically hurts to keep them open.

I hope that maybe you can find some combination to at least get you through the majority of your day. My eye doctor said I needed to see a specialist and that there is a procedure that they put tubes into your tear ducts. I haven't investigated it much but maybe that is something you would like to look into.

Quote:
Originally Posted by bxq View Post
After being diagnosed with Secondary Sjogren's Syndrome, I have tried Restasis, Punctal Plugs, Eye Gel, and Eye Drops, but none of them relieve my dry eyes.

As the day wears on, my eyes get so dry that my left eye wants to shut closed. Has anyone ever had severe dry eyes? If so, what was your treatment?

Thank you

 
Old 05-12-2011, 12:16 PM   #11
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Re: Dry Eyes- Sjogren's Sydrome

hi...I'm using drops that are called Alrex...they are miracle workers!! haven't had an eye infection in over a year. It does elevate the eye pressure so I have to get it checked every 4-6mths. I use teargel at night, eyes have been pretty good considering.

 
Old 05-24-2011, 03:08 PM   #12
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Re: Dry Eyes- Sjogren's Sydrome

I feel your pain I have CPEO with possible Sjogrens so eyes are droopy but I also have super chronic dry eye and have been on restatsis for OVER six months, Theratears oil, omega three caplets - 6 per day, hot compresses (I would think this would dry eyes out?) I still do it, lower temp plugs , too many drops to count and my life has been altered drastically. Now, i have found some i use during day that are super think (Genteal) for SEVERE dry eyes. This is the best I've found. Computer and overhead, florescent lights biggest problem. Trying to stay positive but this sucks.

 
Old 07-10-2011, 03:22 PM   #13
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Re: Dry Eyes- Sjogren's Sydrome

Quote:
Originally Posted by MarisainCA View Post
hi bxq- Ive tried everything you mentioned as well. Other than keeping hydrated and avoiding air currents im also taking flaxseed oil capsules twice a day, I use Thera-tears preservative free vials four times a day, I also use a warm moist compress every morning that i can to open up the oil glands. My eyes feel dry about 80% of the day, its always on my mind and are constantly red.
Hey all, I guess I don't have the severe dry eyes that you all have but I do have serious dry eye problems. The AC, hot air, etc. all bother me and surely the fans. I do have them on now as it is triple digits here now.I have allergies as well so don't use them any more than I have to. I have started using Balance eye drops and they do very well for me. My doctor had me try them first. I can't use Restasis which was disappointing. Apparently there is something else with the same ingredients but the base is different and insurance companies won't cover it. I don't completely close my eyes when sleepijng so I bought a pair of goggles that the Foundation had sent some information out on and they are great. I had tried a couple of other pair and they wouldn't let me roll over and I would throw them off and across the room. lol NEway, I am faithful in wearing these with some night gel as well and I am doing much better. If any of you want the address I will give it to you. I am much more comfortable when I get up now and I can turn without bumping them. These fit closer. Good luck to you all. It is really something to deal with for sure. cbg10

 
Old 07-12-2011, 11:29 PM   #14
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Smile Re: Dry Eyes- Sjogren's Sydrome

I have Sjogren's Syndrome..with the dry eyes. I have tried all kinds of drops including several trys with Restasis drops. Nothing brought real relief until now. My dr. was one of the top graduates at John Hopkins U. and he has arranged for me to receive eyedrops made from my own blood. There are no allergys there. I do need to have my own blood drawn. Then they separate the Redblood cells from the serum. Send that off to the compounding lab , and from there I pick up 16 frozen vials of my serum drops for my eyes. There are no preservities, so it must be kept frozen. I remove one and refrigerate that one. I am good to go. Nice, cool and soothing drops that keeps those eyes happy. I can reappy as needed. So far it means about 4 times a day. I feel like a miracle has occurred. I had had so many bouts with eye infections, burning eyes and inability to continue reading. I am very thankful and wanted others to know there is help out there.

 
Old 07-13-2011, 07:01 AM   #15
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Re: Dry Eyes- Sjogren's Sydrome

Wow, this sounds so good. I just copied your reply to ask my doctor about it when I go see him the next time. I have had to be out in the heat, wind, or fans of late and my eyes, et al are sure talking to me . I thank you for this information. cbg10

 
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