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» LymeNet Flash » Questions and Discussion » Medical Questions » Sjogren’s Eye Questions

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Author Topic: Sjogren’s Eye Questions
Rumigirl
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Lymetoo (and anyone else who has it):

What eye drops do you use that work the best for you for severe dry eye---especially at night?
I know you mentioned it once before, Lymetoo, but forget what you said.

I know that you also said that punctal plugs worked for you. I should ask my eye doctor about that again. I’m leary of it, though, due to the CRPS/RSD and how any procedure can cause it to spread to anew area. It’s not just the procedure, but having the plugs in there that might cause a problem.

My eyes are so dry and there is so much inflammation that I am in danger of damage from the dryness. Plus, it interferes with my vision a lot. I had cataract surgery last year (finally), and need to get glasses, but we can’t get a read on my vision, due to the severe dryness (it changes from second to second).

My eye doctor (I have 2, a retinal specialist & a corneal specialist!) yesterday said that I need to take Prednisone drops twice a day, in addition to the rx Xiidra drops, plus OTC drops, and come back in 2-3 weeks, to avoid damage. Usually, I wouldn’t want to do this, but feel like I don’t have a lot of choice, due to risking corneal damage.

Comments or suggestions from someone who has this?

Another issue: I went off my abx, Mepron, and Plaquenil, due to severe issues, but the issues have gotten better, and I had better go back on them---slowly. I have only been off for 1 – 1-1/2 weeks.

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Lymetoo
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I use Systane ointment. I don't do well with anything else. (not even preservative free drops)

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--Lymetutu--
Opinions, not medical advice!

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Rumigirl
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Thank you, Lymetoo.
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map1131
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Lesson I learned the hard way this summer. If you need to use steroids for eye inflammation/dryness...

Immediately after applying the steroid drops put pressure on the tear duct for at least 30 seconds. This keeps the steroids in the eye area where needed.

Ask eye doctor or pharmacist how to properly do this.

Eye steroids will travel into the tear ducts and guess what? They tear ducts are connected to the rest of the body.

Horrible lesson and it took 6 mths to get the steroids out of the rest of my body.

Pam

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"Never, never, never, never, never give up" Winston Churchill

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Rumigirl
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Pam,

Oh, no!! What were your symptoms that indicated that the steroids had gone to the rest of your body? Sigh.

I never want to do do steroids, of course. When I had the cataract surgery last year (1 eye at a time), I had to do 1 steroid drop in the surgeried eye twice a day for a week.

Thank you for the tip on keeping pressure on the tear duct.

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map1131
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I was in remission stage and feeling really good. I was in control.

Two weeks into the steroid eye drops I had symptoms that were popping up throughout my body. Third and fourth week I was totally confused by what was happening to me.

It took until week 8 of drops(eye inflammation had not improved at all) and a sit down consult with compound pharmacist until I realized what was happening.

By that time every part of my body & brain were ticked off. My adrenals were shoot.

I did some research and ended up going to health food store and bought Sovereign Silver drops for my eyes.

The silver took care of my eye inflammation. Getting the rest of myself calmed was a very slow process.

The lesson is eye steroids MIGHT be necessary for your eyes but education on keeping them out of your tear ducts is priceless.

Pam

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"Never, never, never, never, never give up" Winston Churchill

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Lymetoo
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Same with glaucoma drops. My hubby found that out too. Used to make him sick.

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--Lymetutu--
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Rumigirl
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Wow. Pam, the fact that the silver drops did the trick for you, when the steroid drops did not is golden!

The silver you used wasn't specifically for eye drops, right? (I looked online). But you could use it for eye drops, obviously---ideally a separate bottle from other uses, I'm sure.

I'll have to get some. I have some left over, but it's really old, so not good to use, especially in the eye.

After I saw the eye doctor, I was wondering if I shouldn't have abx drops instead of steroid drops, but this is better, I'm sure.

Actually, I just remembered, I do have gentimycin drops left over from after the surgery last year. Maybe I should use them until I get the silver instead of the steroid drops??

Thank you so much for your experience on this!!

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Rumigirl
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quote:
Originally posted by Lymetoo:
Same with glaucoma drops. My hubby found that out too. Used to make him sick.

Arghh, Lymetoo. What did he do? Glaucoma is no joke. A client of mine in the past didn't use the glaucoma drops (she was using natural remedies). Sadly, she went blind. She was stubborn, needless to say.
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lightfoot
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Wishing you well with this serious issue!!!!

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Healing Smiles.....lightfoot [Smile] [Smile] [Smile]

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Lymetoo
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Rumi .. he does the same thing. Holds his finger over the tear duct. Every once in awhile he doesn't do a good job of it and his vision is extra blurry and he feels sick.

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--Lymetutu--
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Rumigirl
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Thank you, lightfoot.

Lymetoo, Aha, the same thing helps him! It's good that he's doing the drops; the alternative is really bad, needless to say.

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lymenotlite
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Don't know whether this site would help you or not but a friend with dry eyes sent it to me:
https://www.dryeyezone.com

It's winter in the north and my eyes get dry and irritated in this season. I changed my furnace filter and that helped a lot.

Good luck.

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Rumigirl
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Thank you, lymenolite. There is a ton of information there on all of the possible treatments.

I was continuing to have "scintillating lights" frequently in my eyes as a result of the inflammation, plus a real problem seeing. So my corneal specialist, who did the cataract surgery, put me back on doxycline. Plus, I am going back to the retinologist next week. He is the one who originally put me on doxy for the inflammation.

Sigh, it goes on. But it is much better since I started the doxy again---plus am religious about the various drops---or I try to be. I have so many regimens.

The dryness of winter adds to it, too, in spite of pans of water on all the radiators. The cold has been brutal!! It's starting to get warmer----34 degrees today. But you guys in the midwest really got hit badly, scary!

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