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Sjogren's


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#1 Clementine

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Posted 20 March 2009 - 05:57 AM

Does anyone with Sjogren's have constant red eyes and burning? I have had issues since October and it doesn't look like it's going anywhere. Still using Restasis and artificial tears. I just wonder if I need to see the doctor again, or if it's another lost cause and I just have to cope with it. Doesn't help that I just moved to one of the top 5 driest states but I did get to trade this for a lower altitude.

Thanks,
Clem

#2 lizzie

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Posted 20 March 2009 - 11:42 AM

I haven't been diagnosed with Sjogren's, but do have the dry red rimmed eyes with itching/ burning. The less sensitive people I know comment on how red my eyes look- like I'm not aware myself! I'm prescribed Hypomellose, which does help a bit, particularly at night. If I don't use it I can have difficulty opening my eyelids after being asleep. Think I have resigned myself to the fact that there is probably little else I or the doctor can do.

Lizzie

#3 Jeannie McClelland

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Posted 20 March 2009 - 01:23 PM

After going on and on about how good my eye drops are, I came back from a short visit to #1 daughter with red, sore eyes and hemorrhages in the right one. :huh:

I went to the eye doctor and he said the little glands along the eyelids weren't doing their job. Swell~ His recommendation was to lie down with hot wet washcloths over my eyes for 15 minutes several times a day. He gave me 3 different kinds of eye drops to try and none of them did any better than the one I had been using. He also suggested an OTC ointment to put in at night. It's like putting petroleum jelly in your eye! Yuck... Unfortunately, it does help! :lol:

Big hugs!
Jeannie McClelland
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#4 Shelley Ensz

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Posted 21 March 2009 - 01:39 AM

Hi Clem,

I am allergic to the preservative in eye drops (actually thimerisol, to be precise) so years ago, the more I used eye drops the worse my eyes got. Finally they were just totally shockingly red and my eye doctor took notice that it was more than just Sjogren's! He had me go off the eye drops entirely and they cleared up. Now there are preservative-free eye drops available.

So one thing to check is whether you are allergic to any of the ingredients in any of the things you use for your eyes. My eyes are usually a little bloodshot from Sjogren's and the (inside) rims are generally red from blepharitis and MGD. But the allergy made it a zillion times worse!

Speaking of which, since you just moved and are in a new climate, there could be other allergies at play, besides just eye drops stuff.

Anyway, that's just one possibility. So please don't automatically assume it is only the climate dryness or Sjogren's. You might as well use this as an opportunity to set up with a local opthalmologist.
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#5 Jeannie McClelland

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Posted 21 March 2009 - 03:41 AM

Shelly, what's MGD? Is blepharitis more common with Sjögren's / sicca syndrome and scleroderma?

Big hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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#6 Shelley Ensz

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Posted 21 March 2009 - 04:09 AM

Hi Jeannie,

I just knew someone was going to ask that! But I couldn't remember how to spell it so it was hard to look up. :blink:

MGD stands for meibomian gland dysfunction. Of course. Go thou and search likewise. B)

I don't know about blepharitis being associated with Sjogren's or not. Although I have Sjogren's and scleroderma, I also have psoriasis and I believe my blepharitis and MGD are caused/related/associated with the psoriasis, as it is always worse when I have psoriasis outbreaks, and most especially when I get psoriasis surrounding my eyes.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 Penny

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Posted 21 March 2009 - 05:35 AM

Hi there, Clem,

I have just a few helpful hints for dealing with dry eyes.

Like Jeannie said, there is an ointment on the market that can be used (yes, it is like putting petrolium jelly in the eyes) but I would reccomend using it only before going to bed since it makes your vision blurry because it is thick.

Get yourself some portable humidifiers and place them around the house. A whole house humidifier sounds great in theory, but my ENT Dr said that they can cause troubles with mold in the vent system and if you have breathing issues you want ones that you can clean easily. I actually use a warm steam vaporizer in my bedroom because it really pumps out the moisture.

Wear sunglasses any time you go outside, not only do they cut down on the bright light (light sensitivity is an issue for me) but they also help in blocking the wind a little cutting any evaporation issues. I also wear them in the car since those vents really dry my eyes out terribly and they do make special 'sun glasses' for night driving that cut down on glare that help with the vent issue at night and still let you see.

There is a preservative free natural tear eyedrop that comes in individual little tubes that are wonderful, they are easy to keep anywhere and to travel with and you do not have to ever worry about contamination because they are single use tubes.

I hope that some of these suggestions help.

Warm hugs,
Penny

#8 Clementine

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Posted 22 March 2009 - 01:58 AM

Thanks Ladies! I tried the ointment last night and I still woke up in the middle of the night with dry eyes...ugh.

I'll try some of these tips. It is such a nuisance, isn't it?

xo,
Clem