Hi Everyone! My name is Thelma and I'm a newbie. I haven't been diagnosed with SS yet because this just started for. What I mean is that before I had dry eyes but always felt normal. The week of 4/12/10 I started to feel really sluggish, achy, stiff, dry nose and seriously dry eyes.
How do you deal with the dry eyes? It is embarrassing to go to work and have people look at me weird. Two people told me yesterday that I looked like a vampire! :'(
I have been on Restasis for about 3 years. I also was using Systane and use Genteal Ointment and Gel. None of this is working now. What else can I do?
Today I'm going back to the ophthalmologist for the second time this week! On Tuesday my eyes were actually getting better but they dried up overnight on Wed.
My current treatment is: Restasis, Genteal Gel (all day long), Genteal Ointment before bed and the gel when I wake up in the middle of the night. I'm also doing the warm water compresses.
My doctor doesn't want to do plugs. What can I do?
Thanks!
Thelma
I'm sorry you're suffering. I would find an opthamologist who "does plugs." From what I understand it's really no big deal putting them in. My eyes have been super bloodshot for years and I'm fair skinned, so I really look stoned!
Feel better soon
Hugs to both of you, Thelma and Babs. Red eyes are indeed embarrassing.
Thelma, are you taking any allergy meds or other meds that can cause dryness? I hope you can find a trigger for the dryness, so that you can improve. (For me, the most recent trigger was my asthma inhaler with steroids. Made me bone dry.)
Best wishes,
Cheryl
Hi Babs and Cheryl, thanks for your replies!
Babs, are you saying your eyes are red even with plugs?
Cheryl, I do take Allegra and use Flonase nasal spray? Could they be causing the dryness?
I'm also taking birth control pills. I thought they could be drying?
If the allergy meds cause dryness should I stop them? I really don't have massive allergies.
Thelma
Thelma,
Does the Allegra contain antihistamine? Ask your pharmacist about all 3 drugs. (I use Flonase myself, and I don't think it affects my dryness, although I should check on that, too...) Good luck!
Cheryl
Hi Thelma. I don't need plugs yet. I use Theratears drops twice and day and it keeps the grittiness and burning "in Check". I should ask the eye doctor if plugs will help the redness. She offered to put them in once but I said "nah" because they weren't too bad.
hi
I have plugs, and use celluvisc 12 times a day and other gel at night. My eyes were really bad, but since starting on salagen they are not so red (well for short periods) I think i get relief for about 1.5 hours
HI Cheryl, allegra is an antihistamine.
Babs, what a relief that you don't have plugs! I thought you still had red eyes with them!
I read about Theradrops yesterday. Do you need a prescription for them?
Bonnie, are the plus visible to the naked eye? Can you feel them?
I'd never heard of Celluvisc before!
Salagen. How long have you been using that stuff for? Did it really help with the dry mouth? Any side effects? It says it can cause nausea and I don't need help in that department! Did you notice an improvement with the dry eyes because of this med?
http://www.webmd.com/drugs/mono-237-PILOCARPINE+-+ORAL.aspx?drugid=10088&drugname=Salagen+Oral&source=0
This medication may cause an increase in tears. This can be helpful if you have dry eyes (such as with Sjogren's syndrome). Tell your doctor if runny eyes become a problem.
I'll take the runny eyes any time!
I went to see my ophthalmologist for the 3rd time in two weeks (twice this week). Apparently I messed my eyes more! Can you say DUH? ::)
On Tuesday when I saw him he said my eyes were better than last week and explained how it takes a long time to hydrate the eyes. I decided to use Genteal Gel drops and I felt instant relief on Tuesday evening. Then I had the brilliant idea (NOT!) to replace my Optive Refresh with the gel drops. This is where I went wrong. He said I still need to the liquid drops.
He also prescribed some steroid drops called Lotemax which I'm reading can cause Glaucoma which runs like crazy in my family. I don't have it though.
http://www.dryeyezone.com/talk/showthread.php?t=953
So here is my plan of attack for the dry eyes.
Restasis twice a day
Lotemax twice a day
Alternate during the day between Systane drops and Genteal Gel. One hour drops the next hour gel
Genteal Ointment before bedtime.
Thelma
Hi,
The last plugs I had I could feel them a little bit when my eyes were really dry, then I got an eye infection and the area around the plugged was so swollen that it pushed the plugs out. I now have plugs which fit farther down into the punctae (? not sure if this is the correct term) and these are more comfortable.
The salagen has helped a little with the eyes, and a huge amount with the salavia (haven't had oral thrush since taking this) I have been taking this for 3 months. Side effects were a bit scary to start with (excessive sweats - enough that I could wring water out of clothes) this lasted about 2 weeks and occassionaly I take one and maybe don't feel so good. but mostly settled down now.
Celluvisc is in individual capsules which is handy for daily life I use the 1% solution.
Hey Thelma,
Welcome to the boards!
My eyes are all over the place, so I haven't done plugs yet but by eye doc told me that for people with Sjogren's it's pretty much inevitable to end up on Restasis with plugs. I think that's kind of weird that your doc won't do them for you. My doc actually has plugs and you can see them but most people wouldn't notice if they weren't looking for them. Can't be worse than the eye boogers I always have! Right now I use Soothe XP as needed and I really like it. A/C season seems to be the toughest for me, so we'll see how this summer goes.
And, YES, the red eyes are so embarrassing! My eyes started to get irritated when I was out shopping this past weekend (darn A/C) and I felt like everyone was staring at me!
Suzy
Oh dear! ??? I don't think I should have read this thread today!!! ??? I have my first ophty app't this afternoon and if I wasn't hyperventilating enough already.... :o
I have been able to deal (so far) with all the other effects of SjS without too much anxiety but HATE, absolutely HATE anyone monkeying with my eyes! ???
How do you all get thru it???? :-\
Of course, it's raining today so the eyes aren't near the problem they have been on sunny, dry days. Will he still get to see the dryness? Not so worried about the redness, stick on a pair of sunglasses going thru the stores or where ever I need to go ('cept the bank, LOL) and let everyone think I'm someone important! :-X It's amazing the looks you get! :-\
Good luck Thelma!
Hi Suzy, thanks for welcoming me to the boards! I can't believe your doctor has plugs! I had the feeling they would be visible. I hope I can get this dryness under control with drops alone!
I'm going to ask my doctor about the drops mentioned here such as soothe xp and Celluvisc to see if I can try them.
The red eyes are terribly embarrassing. I am tired of walking with my head down so I don't have to look at people!
Bonnie,
Those Salagen side effects are scary! It's been hot here this weekend and yesterday I had to turn the AC unit in our bedroom on. I was sweating so bad! So I sat in our bedroom with some protective eye ware sort of like this
http://www.uvex.us/products.aspx#/product=3476&folder=98
Driving kills my eyes and I've been driving with sunglasses to protect my eyes. I had managed to make my eyes feel really good this weekend and I think they dried up on the way to work!
the comments about the eye boogers cracked me up! ;D
I have nothing coming out of my eyes not that they are dry!
MAC - I'm so used to the doctor messing with my eyes that I don't mind anymore. At least it makes me feel good when he says my corneas are good.
I have to find a pair of clear glasses for night driving. They have to have large frames to protect my eyes. I walked into a store on Saturday with my sunglasses on too! LOL. Today I was wearing sunglasses even though it's raining! LOL
Thelma
You go girl! With those sunglasses on...makes everyone wonder what you're up to! In my old age have gotten a lot less caring about what people think.
And the 'boogers'...I can relate. The white goo began six years ago and I was so embarrassed at my daughter's wedding that year because I never knew if I had any there! I am sure other's noticed but thought they were being 'polite' by not saying anything. Wish they would have given me the head's up.
In the last 5 months I have bought 2 pair of new sunglasses, each bigger and darker than the last. I noticed that even if the windows aren't opened to have a breeze, the vent which blows on the floor (or dash) has air gently passing over my eyes and drys them out. Some have been wearing goggles to keep their eyes moist but even these sunglasses fog up when it gets warm in the car or I have a Sjoggie 'flash'. I like your idea of finding a clear pair for night but have an idea that I will need distance glasses as well as reading so that may take care of itself.
Enjoy the day! Hugs,
Gidgie's Gammie
I don't have any goo coming out of my eyes at all MAC! NADA!
I was researching sunglasses over the weekend and found that the ones with the yellow lenses are good for night driving.
Not such a good idea according to this site so I'm back to trying to find clear glasses for night driving!
http://sunglasses.lovetoknow.com/Night_Sunglasses
Hey! If the movie stars can wear sunglasses at nights and indoors all the time why not us? LOL
Tell me about the stupid vents in the cars! I've closed the vent closer to my face and one I've blocked up with a tissue!
Thelma
You got it! The OLDER ??? cars had floor vents which you could manually close on either side whcih were great. Husband wanted air but your feet were freezing, no problem. Now you have no options. We even had 'wings' that you could open to get a little air without it blowing in your face or messing your hair (a big concern when I had long hair!), or open during rain without getting the car wet. My sad day was when I had to buy a vehicle without a wing.
With as many Sjoggies as there are, amybe we should start a campaign to get some of those options back! LOL ;D
Well, the wx is clearing and the sun is beginning ot think about coming out...so better find my shades. ::)
hugs
Mac,
Good luck today. I am totally with you on hating going to the eye doc. I don't understand why they torture us with all of those drops when our poor eyes are SOOO sensitive. I always walk out of there with my eyes way worse than when I went in, which seems weird to me because the eye doc should help us. Rationally I know they are trying to help us, but you would think they could have some stuff for sensitive eyes or maybe go a bit more conservative on all the drops.
Suzy :)
Hi Thelma:
I posted a few weeks ago about trying a natural remedy for dry eyes that is suppose to treat from inside out - to avoid using eye drops.
The good news is- my dry eye is much improved. This is my third week - no need for drops. I will continue to use it and see what the long term results are.
The product is TheraLife Autoimmune Dry Eye - you can find them on the theralife.com web site.
I am sure how it works will depend on the individual. I still have both meibormian and lacrimal glands intact.
Let me know if it works for you- curious!
Pegasus
Plugs gave me some real joy for the dry eyes! I also have red eyes in the mornings and my coworkers think I have terrible allergies!! I have smartplugs in the bottom which help and am about to get the 3 month disposables in my upper because I still have so much trouble with my eyes. Try plugs, try theratear liquid gel preservative free and try LACRISERTS! I love mine. The prescription is not cheap but I am hoping that my insurance will pay on them and pay on them well. I'm about to meet my meds deductible so I suppose it won't matter. Right now I am using samples, your eye doctor can order them in for free.
Hey Jess, Have you tried running a humidifier 24/7 and see if it might help with eyes? ;)
Just a suggestion and have found a cheap hygrometer (reads humidity) pays for itself. Try to keep my humidity between 40-50%. Good luck with those 'peepers'! Joy
Thelma,
You have it all wrong, they don't look at you in a strange way because they think your a Vampire, they think your smoking weed and wonder why your not sharing and oh, that's medical weed ;)
Epson, you bring such levity to this board...Thanks ;D
Joy, you are so right about the humidity. It has been really dry here this Spring (humidity about 20-30%) but the last two Mondays the moisture has climbed to 80-90% and my eyes felt so much better! Guess that's why the doc was so surprised when she looked at them! (see 1st Ophthy) Said I looked healthy enough! ::) Who on this board hasn't heard THAT before???
We have a relatively cheap indoor outdoor wireless wx gauge which gives humidity for both from Target. Works great!