questions about bion tears & restasis

[Suloni]

dear all,
i have been diagnosed with severe dry eyes from 20 yrs of excessive computer use
"computer vision" infrequent, inadequate blinking. (nov. 2015).
and i've also recently been diagnosed with Sjogrens (dec. 2015)
i don't know what's affecting my eyes more, the severe dry eye or Sjogrens.
i have some dry mouth - mostly early mornings only.

Questions to this group:
1. i seem to need 7 to 8 vials of Bion tears in a 12 hour period (more if i am on the computer for 6 hrs. is it normal to go through so many vials  for you all? can you buy it in bulk?
2. Ophthalmologist wants me to go on Restasis with steroid. I am hesitant to do this. I'm worried about it not being helpful and possibly harmful.
3. Has anyone tried the Lipiflow procedure or manual meibomian gland expression (and if so what was the cost)? really want to know more about this.
4. I can cry when I'm sad/overwhelmed, do other people with Sjogrens still generate emotional tears?

i have changed my diet and habits
(+) taking Bion tears every half hour while awake (really feels healing)
(+) taking Genteal severe dry eye gel at bedtime
(-) Refresh plus (for daytime) irritated my eyes
(-) eye drops with preservatives (ie. Blink, Sustane) irritated my eyes
(+) 80%=organic steamed greens, 10%= whole grains
(+) taking fish oil & flax oil 3 times a day
(+)doing blinking exercises
(+) taking frequent closed eyes breaks
(+) using Ocusoft eyelid scrub 2 times a day
(+) wash face with baby shampoo 2x a day
(+) using Biotene toothpaste & mouth spray 2x a day
(+) get 8 to 9 hrs of sleep a night or more on weekends
(+) exercise in 15 min. increments 4 to 5 times a day (walking, yoga, indoor bike, elliptical)
(+) will be getting humidifier for work desk and bedroom
(-) reduce computer work week to 30 hrs (from previous 40+)
(-) limited caffeine in form of 2 cups chai/tea a day
(-) no dairy, no wheat, no sugar except in the form of fruit and sweetened coconut milk in chai
 
my husband  has read many conversations on this forum to me.
Your collective stories/advice has been VERY helpful.
MANY THANKS~~~~
Suloni

[Navigator]

You are doing an amazing number of things to get better without resorting to drugs.  I have been on Restasis for several years, it has been all positive.  I no longer need eye drops except if I am out in the blowing wind.

Only you can decide but Restasis has enabled me to go back to reading on my Kindle, and to no longer have painful eyes.  It is an anti-inflammatory for the eyes.  I have had no side effects at all and would not give it up.  It is a game changer for dry eyes.

Only you can decide if you want to take it but ...you also do not have to sign up for life.  You can get a 30 day supply and try it out.  Let the results speak for themselves.

[ohiolady]

I have very few emotional tears.

Anna

[annette2]

I use Restasis also, and have for years. I also have punctal plugs to keep the tears I have.

Restasis does not work for everyone, but I really appreciate that they do work. It makes life easier.

On dry.org Dr Fox gives instructions for using warm compresses and eyelid massage to make the oil in the meibomian glands flow more readily.

[Suloni]

Dear All,
Thank you for courage and resources. I will start taking Restasis this week and work with an ophthalmologist on trying the plugs in the coming months. I haven't been able to find Dr. Fox's warm compresses and eyelid massage instructions on dry.org, but it looks like another useful resource. We just bought the last 3 boxes of Bion Tears at the grocery. This should last me about 2 weeks.

[Staying healthy]

One thing I do that really helps my dry eyes is to always use a 100% organic unscented lotion, oil or butter on my face and around my eyes. It helps so much. Sometimes the use of excessive drops will wash away the tears you have left and chap the outer edges of your lids and face making them feel tight and dry, so the moisture around the eyes helps.

[Suloni]

Thank you for your advice. I tried to cut down on Bion Tears today. My left eye has been suffering because we think I had an eye infection 2 months ago. Antibiotic drops made it worse in a way, drying it out terribly. Bion Tears and cold compress seem to be the only thing to calm it and eradicate the red.

How long after taking Restasis can you put a cold compress or Bion Tears on the eyes (eyes burned from Restasis for an hour and a half)? My ophthalmologist had me put Lotemax (steroid) in my eyes 15 minutes to half hour prior to Restasis.

[kimberly64]

Restasis has very little side affects.  The positive affects are eyes feel normal again after a couple months of use.  My tears are back, my eye doctor reports dramatic improvement on my last tear break up test.  It is a medication that has provided much quality of life.  I would not delay getting on it any longer if I were you.
Kimberly   

[Suloni]

I have been on Restasis for 9 months now,
and i finally feel it has made a difference for my eye moisture.
My left eye is dryer and more irritated than right.
i don't understand this.
Restasis must have a cumulative effect, slow to build up, but eventually works.
Restasis does sting my eyes quite alot, during the night time dose especially, probably because my eyes are  very tiered by 9pm.
The stinging is minimal for the a.m. dose, and mild stinging disappears in the a.m. with in 30min. of application.

i need Gen Teal Severe Dry Eye Gell, over night, to keep my eyes comfortable while i sleep.
i don't understand why Restasis does not work while i sleep.

My eyes are red and irritated dry after stressful meetings at work.
Stress seems to trigger more eye dryness.

i'm still trying to keep-up with a mostly Vegan diet , high in dark greens, and moderate exercise through the day.

i do eye blinking exercises. remember to blink.

i always take my wiley X sun glasses out with me, and shield my eyes from wind & breezes on my eyes.
i stay away from AC vents and fans indoors.

The computer screen is a huge irritant to my eyes.
On days that i don't use the computer, or use it very infrequently, my eyes feel better.


I'm considering doing the following (found on other posts here)
https://sjogrensworld.org/index.php?topic=29018.msg306300#msg306300
"take high dose Omega 3 fatty acids. I use Life Extensions brand mostly. I use the Super Omega-3 EPA/DHA with Sesame Lignans & Olive Extract."
"Life Extensions CoQ10"
https://sjogrensworld.org/index.php?topic=28081.msg298228#msg298228
"the high dose vit B2 (4 x 100 mg tablets/day) a knowledgeable nutritionist who works with ex polio patients suggested to me is really helping my dry eyes both at home & work with the pc, lights, air con."

Thank you sincerely for the advise and support,
suloni

[cccourt1942]

Restasis must have a cumulative effect, slow to build up, but eventually works.
Restasis does sting my eyes quite alot, during the night time dose especially, probably because my eyes are  very tiered by 9pm.

***I may not be correct, but here is how I understand the improvement w' a medication:  It is the improvement to your eye itself which results in how your eye feels upon medicating it.  In your earliest post (on this thread) you mention the ophthal wanted to give you Restasis AND steroid drops.  Well...the steroid drop is what makes your eye feel less tender prior to using the Restasis.  I used it for about a month when I was initially Rxed.  I keep this med and am allowed if my eyes ever hurt for any reason...AS LONG AS I DON'T USE DAILY OR ON REGULAR BASIS.  My rule of thumb is not to use it over once a month. As to tired eyes:  you know your body.  Sometimes it can be with the forced air in your home (heat or cool) but that is true at your office as well.  As to "build up" (which may be correct) I believe as I said earlier:  it's your improved eye surface.***

The stinging is minimal for the a.m. dose, and mild stinging disappears in the a.m. with in 30min. of application.

***I use (and the ophthal has advised to do same) Alcon Tears Naturale Free if my eyes don't calm within 10 or 15 minutes after applying the Restasis.  I think I can safely say I use the Alcon tears EVERY night.  I am retired, use a computer for fun during the day, an i phone for fun during the day, and use a handheld device for most reading.  My eyes are tired at night.  I still have that stinging which seems as if it isn't going to subside.  Also, when I get up for the bathroom, I reapply the same drops. ***

i don't understand why Restasis does not work while i sleep.

*** see above     I don't either.  I have no functioning lacrimal glands.  That means, no tears in over 20 years.  ***

The computer screen is a huge irritant to my eyes.
On days that i don't use the computer, or use it very infrequently, my eyes feel better.

***Hand held device for reading  result in making my eyes feel worse.  I believe that is due to Sjogren's.  You can poll it and have to be able to get 90% yes replies if we use computers, etc.  In the early 80's I worked on a computer (old DOS...blinking cursor, green fonts on black screen).  The optician advised a specialized tint for my glasses.  I did that for my glasses well thru Office products and contemporary computer screens, background colors, fonts, etc. You mentioned blinking..I think this is key..IF YOU HAVE TEARS.  If not, use your OTC drops during the day before you do your forced blinking.***

Hope you can read this in my modified format.

Glad you are doing better,
c3

[Jus]

Hi All, 
I haven't tried Restasis but have done a lot of research in this area and would be worried about negative effects.  I have meibomian glad dysfunction and reduced lacrimal gland function.  I use non preservative eye drop vials many times a day.  Tried a few brands and use Optive Advance & Systane Gel currently.  Minimal relief from any of the drops.  Have tried Optimel & Vitapos ointment.
Biggest problem for me is excessive eye blinking.  Has stopped me getting jobs and a romantic partner as I blink constantly.  Its like my lids need to auto shut to protect the eyes so close and I fight to keep them open.  Would love to hear anyone else's experience with blinking?
Have used botox for a few treatments but stopped after an allergic reaction to something else gave me hives and a swollen eye that had the appearance of fluid surrounding my eyes that is taking a long time to go.  Also tried intense pulsed light treatment but no effect.
I believe that if I can reduce my eye sensitivity to all sorts of things, wind, light, stress, poor sleep, etc, than I will go back to normal blinking.
Recent research shows imflammation of eye in cornea might be resolved by lipid autacoids, see
https://www.dovepress.com/resolvins-and-aliamides-lipid-autacoids-in-ophthalmology-ndash-what-pr-peer-reviewed-article-DDDT

Hope this is of interest to others and wishing you calm, relaxed soothed eyes!
Regards,
Jus