Tuesday, January 15, 2013

Can My Eyes Really Get Drier?

Sahara Desert

Although I did not think it was possible, my eyes have actually gotten drier.  I guess we’ve moved from a regional desert to the Sahara.

Now, my eye history is long and complicated. My symptoms are made worse due to a previous corneal infection and subsequent scarring, which my doctors attribute to Sjogren's. I also have had uveitits, another serious eye condition which needs to be kept under control or can lead to vision loss. I also have seriously dry eyes, related to my Sjogren’s as well.

Last week, my eyes started to really bother me in a way I have come to associate with serious flares. I became extremely sensitive to light (again!, but it had been a while) and developed constant eye pain, to the point that putting in my usual preservative free drops in my eyes was quite painful.  My right eye became so uncomfortable that I had to use an eye patch just to watch TV. Looking at a computer screen was out of the question.

Generally, when I have a flare up, I put extra drops in my eyes. This time that made my eye hurt more, so I immediately became particularly concerned.

Early Sunday morning my husband I bundled up and trundled off to the emergency eye clinic, where my doctor wants me to go if anything out of the ordinary happens to my eyes.

The good news is that there was nothing requiring emergency care like a flare of my uveitis or an infection.  However, the doctor did notice that my eyes particularly the right eye was extremely dry to the extent that the layer that covers the front of the cornea or corneal epithelium had been effected. This extreme dryness she explained was why I could not put drops in my eye without pain; dryness this severe can feel like a corneal abrasion. Ouch! 

Of course, my blepharitis and ocular rosacea were also simultaneously in full force, which also contributes to eye discomfort. 

The doctor suggested using my nighttime eye ointment (my preference is Refresh P.M. Sensitive but there are a number available) frequently during the day to improve the lubrication, more warm eye soaks, and re-starting steroid eye drops. It was a bit of a surprise to me that my eyes could still be so dry given how much time and how many steps I take each day trying to keep them moist. I guess that is what happens with Sjogren's.

I thought I would share my daily growing eye care routine for my dry eyes and blepharitis.  
What do you do everyday to help combat your dry eyes?

~ Preservative free drops about 8 to 9 times a day.

~ Restasis 4 times a day as prescribed by my doctor

~ Steroid eye drops as prescribed by my doctor

~ Warm eye soaks 2 times a day.

~ Ocusoft lid cleanser

~ Preservative free nighttime eye ointment

~ Humidification every night for dryness


  1. I started using Vaseline directly in my eyes after reading about that online. I checked with my opthalmologist, who approved (I was surprised). I carefully line inside the lower eyelids with it, so that with every blink, my eyeballs are covered with a protective coat. Nothing else seems to cool the nonstop burning of my extremely dry eyes. Vaseline with additional preservative free eye drops seems to help the most of anything that I've tried. It's not perfect, but I do get some temporary relief from the otherwise constant burning.

  2. I really sympathize with everything you said here. I experience all of the same things you mentioned. So far it has been difficult to get good eye care even though I have a great ophtalmologist who saved my vision. Several years back when I didn't know I had Sjogren's, my infant son scratched my cornea and it was excruciating...the doctor laughed and said he hardly thought it was anything that should cause me such pain. Untreated, I developed a recurrent corneal erosion and several years later, when I was breastfeeding my daughter, we got thrush and the yeast from the thrush attacked my eye so I had a rare fungal infection inside my cornea that could have blinded me forever.
    The past 2 weeks I have had really severe blepharitis and it's miserable. Regular doc put me on a round of prednisone but I think I need something more.

    I need to get better at using drops regularly and get a humidifier in my bedroom. Thank you for sharing your experience, it really helps to see that someone else out there knows what I am going through.

    1. I really appreciate your comments and I'm so glad reading about my experience is helpful. Blepharitis can be quite uncomfortable when it is flaring and combined with dry eyes it can really limit what I am able to do. I have had corneal problems too and they are definitely excruciating. It seems I spend too much time at the eye doctor, but we only get two eyes.

  3. Ok, Now that the Restasis drops are in my eyes I can comment. Sounds like a good idea to try the Occusoft because I just can't seem to eradicate the Blepharitis.
    People have said that it is not good to use Vaseline in your nose and eyes, but I do use it as a light coating on my upper lid to help retain moisture. There is a doctor who suggests that. And I use Tears Naturale PM for the night gel. Is one of your problems Fuchs Dystrophy? There is a very authoritative Yahoo group that is very active and talks about Fuchs and all of the various surgeries and doctors who are skilled with them

    1. Thanks for writing. I alternate between the Occusoft and Johnson's Baby Shampoo for the bleharitis. It does help, but not always enough and my eye doctor has put me on prescription medication when it is particularly severe. I don't have Fuchs Dystrophy, but I am prone to having corneal inflammation or keratitis, which can happen with Sjogren's.

  4. Hi Gal, Thanks for your great blog. I had worn contacts for about 17 years, one day I just couldnt wear them anymore. Went to the eye doc and she told me to use Lotemax...no instructions, just twice a day. After doing research I found that Lotemax has caused more harm than good. After a few days of use, my eyes became SO dry it was unbearable. I went back to the doc and she said I should just start restasis, "everyone uses it." She didnt do any tests on me, didnt even look at my eye. Needlesstosay I did not go back to her. Went to a University Doc, and he diagnosed me with blepharitis and told me to never use Lotemax again. Been doing warm compresses, baby shampoo and a slew of OTC drops, but dont have much relief. It could be a coincidence, but I think the Lotemax is what made my eyes worse. I hope that isnt something you are using, and if it is, maybe consider trying something else. Best of luck to you.

    1. Thanks so much for writing. My eyes are too dry for contacts as well. I tried to wear them for very short periods of time like when I went our in the evening, but stopped being able to tolerate that a number of years ago. I'm sorry to hear about your bad experience with Lotemax. I have been prescribed it in the past for short periods of time and it has helped my symptoms. However as with many drugs, there can be side effects and everyone reacts differently. One thing that really helps me when my eyes are unbearably dry is to use the nighttime eye ointment during the day. It can be messy but it does give me some relief. I also wear sunglasses even indoors to help the light sensitivity that often accompanies the dryness.

  5. Thank you for sharing this informative post! I heard that there are some people suffering of poor eye sight and they are looking for good eye doctor which provides good services and good results.

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