What drops/gel are you all using?
It's been almost 2 years since I had steven johnson's-
and my eyes are killing me lately I've gone from using a PF drop (Refresh and Systane Ultra) to a thicker PM gel several times a day (I've tried them all but like the Systane PM one best - it seems thicker and less greasy) and using tranquileyes at night. I have to wear tinted glasses because my eyes can't handle light of any kind.
The problem is that between work (staring at ether a computer or working on jewelry under bright lights etc) and the dry heater blowing heat in my chilled old house my eyes just are not happy. I'd love to see an eye doctor but don't have insurance and can't really afford to see an eye doc just to be told 'keep up the drops'
Just wondering what those with SJS are using? any tips or advice?
My doc gave me a sample of this and I have been using it ever since...so far so good, no burning and it has helped me all day!
diagnosed with dry eye, blepharitis and also crohn's disease.
I just use preservative free thera tears drops and the eye scrub foam. Also I try to limit the amount I use. I used to use the drops too much I think and at the moment it made things feel better but in the long run I think irritated me. Who knows though.
I use the preservative free Refresh Plus tears. They are low in viscosity but work well for temporary relief. Also, at night, I would use Genteal PM
Originally Posted by GinaJ
It contains mineral oil and white petroleum gel which will keep your eye moist (or lubricated) through the whole night.
Also at night, I use the Ocusoft foaming eye lid cleanser. Because SJS causes so many problems to our eyes, we tend to hold on bacteria longer in our eyes especially with all the mucous we produce throughout the day. So make sure you clean your eye lids EVERY night before bed. This helps lower the risk of infection.
Had Lasik 8 months ago and have had moderate to severe dry eye ever since.
I went for the Lipiflow assessment yesterday, the Dr that assessed me was a different one with once again different advice on which drops to use.
I told him I was using Blink, Systane Ultra or Systane Balance on average every hour during the day, if conditions were good I could maybe go 2 hours, and Genteal gel drops at night. He told me that is way too much chemical for the eye to handle and that I should use the Systane Ultra up to only 4 times a day, and he told me I could use unlimitedly the non-preservative Refresh Plus, and the non-preservative Refresh Celluvisc at night, he told me to get rid of the Genteal and Blink altogether. (This is the same Lasik clinic that recommended them to me in the first place, makes me crazy!).
Last night I used to Refresh Celluvic and when I woke up today my eyes felt really different, in a good way. I used the Systane Ultra about an hour after I woke up (normally I have to use something right away), it's now 8 hours later and I've only used one vial the refresh plus (which is one drop each eye about 3 times), I'm just amazed, not convinced yet it's a fluke but feel very pleased!
In many ways I am still convinced that too many drops make things worse. Systane Balance is still probably my favorite. I did not really like Systane Ultra. But, being in a store or office is hard to deal with no matter what you use. I have to do it too. My dry eye is Lasik induced.
Originally Posted by doppelgaenger