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Sjogren's Syndrome
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Posted 7/19/2012 6:46 PM (GMT 0)
Hi Everyone,

I have sjogrens and this morning I went to see a new eye doctor. I told her about my having sjogrens and she said fish oil is very good for my eyes. She took a look at my eyes and she said I also have a condition where the outer cells of my eyes are becoming depleted. I asked her what the worse is that can happen with this and she said I could more easily get an eye infection.

She wants me to use something better than the artificial tears I've been using for years for the sjorgens. She gave me free samples of other over the counter products that will do more to help me.

For the other conditions, she wants me to use lid wipes or lid soap and put a warm wet compress on my eyes twice a day for 5 minutes. Does anyone else have this? If so, do you use the lid soap on your fingers and wipe away with a washcloth?

I guess the outer cell condition can improve so I'll be working on it.

Does anyone have issues with their eyes burning when you're on the computer?

Thanks!

Posted 7/20/2012 12:38 AM (GMT 0)
My eyes are so bad, so yes, look for blink eye drops and use muro 128 eye drops at night, both of these are dye and preservative free.
Best things for this is to boil an egg, full time you would regularly then after you get it out off the boiled water wrap the egg up in a towel and place it over
your eye/eyes, it'll keep warm for a very long time, other thing is to get a towel really hot and wrap it in a wooden spoon and hold that on your eye, both of these with help soothe your eyes...and eating watermelon will help put moisture back into your body...I also have tear duct plugs...Try the boiled egg over your eye it stays warms and is nice...
Many well wishes to you...I tend to be more in the RA forums so please let me know there if this helps you, be careful with the soaps as they might dry the eyes out more,
but warm water soaks without soap do feel nice....Prayers and well wishes and keep us posted as we do care...
Posted 7/20/2012 3:20 AM (GMT 0)
Use eye *lubricants*, nothing with medication in it. That is, use Tears Naturula II, GenTeal, etc. NOT Visine, etc
Posted 7/29/2012 2:00 PM (GMT 0)
I have been diagnosed with meibomian gland dysfunction. It's a dry eye condition that sounds as if it's worse than having sjorgens.

This condition can improve so I'll be using the lid wipes, the warm wet compress twice a day, the lubricant drops (you're right, Lynwood, not visine it contains a chemical my optomitrist said), and making sure I do these procedures before I apply makeup and after I take it off. I'm going to try to not wear eye makeup so often. Only for special occasions.

Thanks for sharing, Lynnwood and Chartreux.
Posted 7/29/2012 5:20 PM (GMT 0)
Dry eyes no matter the dx sure can hurt, the warm compressess are a start, givethe boiled egg method a try just wrap it in a towel and the relief lasts longer. Many well wishes to you. Hope your eyes improve soon.
Posted 7/30/2012 9:44 AM (GMT 0)
Thanks Chartreux!
Posted 8/30/2012 3:03 AM (GMT 0)
I was recently diagnosed with Sjogrens. I just saw my eye doctor today; she also suggested flax seed oil; and to wash my eyelids gently with Johnsons baby shampoo; to put warm compresses on them twice a day. She said it would help the glands to stay open and not get plugged up. She also has me using restatsis twice a day. And a mild steroid drop for two weeks.

I was not having any symptoms of Sjogrens until recently, even though I tested positive for it 3 months ago. My health practitioner has me taking Byron White formula drops A-V, and I think the drops caused the symptoms to get worse. I understand that is supposed to be good; it gets worse before it gets better, I hope it gets better soon. My eyes are fire engine red and my mouth is so dry I wake up multiple times in the night to drink water. I have found that after brushing my teeth if I take a q-tip and swab some pure Vit E oil around the inside of my lips it helps.

Also taking curcumin, bromelain, ginger, CO-Q-10, fish oil, chorella, and extra Vit B, C and D in addition to regular supplements. I also have EBV that I have had for 40 years and it has recently been reactivated.

I am committed to getting all of this immune stuff under control and into remission; am using a wonderful healing hypnosis app on my iPhone from Glenn Harrold. I go to sleep to it every night; and when I hit the wall during the day I listen to it for 30 minutes. It really helps.

Wondering if anyone else on this list has used the Byron White formula for auto immune issues. It is supposed to be amazing for Lymes so I would assume it can help with other attacks on the immune system.

Peace
Posted 8/30/2012 4:15 AM (GMT 0)
Sjogren's Syndrome is an OVERACTIVE immune system. Something like Bryon White AV looks like it is supposed to BOOST the immune system. That is going in the wrong direction, taking something already overactive & making it stronger. If anything, you would want to take something to LOWER the overactive system, and that sort of thing is just not available.

That would be why it's making the red dry eye issues worse. I suggest stopping the BW AV. Instead use eye *lubricants*, withOUT any medication, such as Tears Naturale or GenTeal Eye drops. This is usually the first line of defense before going to Restatsis. I have never heard of anyone using both Restatis and a steroid drop - you may want to look into co-reaction between those two.

Hope you feel better soon,
Posted 9/4/2012 2:34 PM (GMT 0)
I use Refresh drops and take 4 x1000 mg fish oil everyday and 3 x 1300 Evening in Primrose oil. This helps a lot. Remember to blink a lot so your eyes get refreshed. When you get intent on what you are doing, we forget to blink. Curcumin(turmeric) does help to lower the joint pain. Flaxseed oil in any form seems to make thing worse for me.

The best thing is to start with a healthy diet...stay away from sugar, dairy and gluten. This in itself lowers the inflammation .
Always check with your doctor and pharmacist to check to see if any supplement will interact with your meds.

Good Luck!
Posted 9/17/2012 3:06 PM (GMT 0)
Hello!!

I do use some over the counter drops for my eyes, but found that it only provides an extremely temporary relief (plus they are quite expensive). My eye doc prescribed me Restasis.... and I have found that it has helped dramatically!!! The only drawback to Restasis is that it takes like 3-4 months to start working (put in twice a day).

The warm compresses on my eyes at night do help a lot too.... also I plan on putting in a humidifier into my bedroom.

Hope my thoughts are useful.... good luck:-)
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