I was diagnosed with Sjogrens via a lip biopsy I had relative to one of my other diseases (Neuromyelitis Optica) over 4 years ago. My only symptom has been a slight dry mouth. Then about a month ago suddenly my eyes felt scratchy. I went to my opthomologist who said my eyes were VERY dry, and this had come on since I last saw him 2 months ago. Right now he's having me try various types of eye drops, and then possibly moving on to Restasis and/or plugs.
Questions for you experts: 1. Can a Sjogren's symptom flare up suddenly?
2. My dr. said sometimes this type of dry eye can subside or go away quite suddenly. Have any of you had this experience?
3. The close-up vision in my right eye has also gotten a little worse in the past 2 months. Do any of you experience vision changes when your eyes get dry?
4. What type of OTC drops do you recommend?
5. He said Restasis takes 3 months to work. Is this what you've experienced?
6. Because I have a lot of arm and hand mobility problems because of my NMO, any suggestions on putting drops in more effectively?
Thanks for your responses, and Happy Thanksgiving. Kathi
I am so sorry for your eye problems.
My eyes get so dry that the lids almost seal shut when I sleep and when I open them, it causes a scratch on my eyeball. That usually means a trip to the eye doc for a contact and antibiotic salve.
On the norm, I use Restasis and it does take a while for it to make a difference. I also use over the counter Lubrifresh PM. It is not a drop, but a salve and works so much better than drops or gels for me.
A flare can occur quite suddenly. When my eyes are really bad, the vision is impaired.
The way I put my eye salve in is to pull my lower lid away from face a bit and drizzle it across the eye.
I hope you can find some relief! :)
I got tremendous relief from Restasis in the first week... but the trial I got ran out, and now I'm waiting to hear if my insurance will cover it.
I also use Refresh plus eye drops. They work pretty well for me, and they're not sticky like some others I've tried.
Yes my vision changed a bit when I was so dry. I use and love restasis, and wish everything worked that well. I also use Systane ultra if I need it or replens optical lubricant. Restasis worked gery quickky for me.
Hi Ihtak,
Let me also welcome you to the SJS World and family! Please do look around the board by using the search engine located in the upper right hand side of this page. You'll find tons of topics and scads of information and you'll often find me in the ether's as I learn so much moor from the wonderful members here than I do at my doctors.
Ah, the eyes....yep, one of my first symptoms and still the worst one to date I'm afraid to say. My eyes started out scratchy and then my vision went fairly quickly to the point where I had to give up driving as I could not see well enough any longer. Anyway, found my way to an opthamologist and he put me on Restasis along with Doxycycline. I'm still on Restasis six plus years later and would never give it up (it took several months to build up and work well in my eyes). Now, you'll find that just because I have good results with Restasis doesn't mean everyone will because we are all so individual in our chemical makeups (some members here can't use it at all for one reason or another, to members like me who've been on it for years. Then there are other members which it worked for them for a short time and no longer does... Restasis, like a lot of meds, is a crap shoot and no one can predict who it will help and who it won't).
About OTC drops, wow, there are so many on the market and as long as you use preservative free, you should be good (you'll find a lot of members have a preference, and currently I like Systane Balance and the heavier gel drops - they help my poor peepers the most - that is until I find another type to try!) ;) :)
Again, welcome and I hope that you'll find this board as interesting, informative and welcoming as I have all these years. :D
Take care of yourself -
Patze
Kathi,
I prefer Systane Ultra otc drops. (I don't use gels because they make my vision blurry, and I don't like the thickness.)
I noticed a difference with Restasis after about 3 weeks. I love it. I hope it works as well for you!
Cheryl
Dear Kathi
I used Restasis for years, but when I stopped I didn't notice a difference.
Now I use Ultra Systane, OTC and a pure water spray called Nature's Tears.
But there's another Systane that everyone is using now. I haven't tried it yet, tho'.
Good luck. Dry eyes are no fun.
My dry eye developed very suddenly and I had terrible corneal abrasions.
If your mouth is dry, do consider one of the medications that increases saliva.
It also helps me to make sure my nose and sinuses are clear, so I don't breathe through my mouth at night.
Some parts of my condition seem to stay pretty much the same, year in and year out, and other things come and go.
Everyone experiences things differently, and things change from time to time.
It is a weird strange trip, to say the least.
Welcome and HUGS
and keep us posted on your adventure!
Elaine
I wish I could get restasis but I dont think its available where I live and the eye specialist said to carry on with the drops - visco tears at night and Optive in the day but they are not working whatsoever.
Lacrilube is better at night but I am stuck in the day, Thera Tears which are preservative free make my eyes itch, Systane has preservatives in them so the chemist told me and they dont work, I can use nearly a whole bottle in a day.
Its going to be a long summer, 35 degrees today and boy have I suffered, although I did go for a nice cool swim in the ocean, wearing my rash vest, hat, sunnies and shorts of course - but it was very nice.
My eyes are so blurry today, wish I could swap them for a new pair.