15 replies to this topic

[tiredblood]

Since being on a TKI, I have developed very dry eyes and subsequently went to an ophthalmologist and was Rx'd Restasis.  Anyone else used Restasis since on a TKI and did it help?  The ophthalmologist told me it takes about 2 months to start working.  The copay is only $15 less than my TKI copay, BTW. 

[janne]

 I also have the dry eyes with Tasigna and Restasis was recommended to me by my ophthalmologist, however I declined. Please continue to post and let us know if it helps.

[hannibellemo]

I, too had dry eyes and my eye doctor suggested I try a couple of the over the counter lubricants before I went for the big guns. They worked for me and I no longer have the problem. Not saying they cured me, just that it may have been a temporary side effect.

[chriskuo]

My opthamologist recommended Genteal over the counter.  It helps with the dry eyes that come with the watering.

 

I have had to get a prescription for short-term use twice in the last 2 years because the eye condition led to an infection.

[tiredblood]

I bought the Genteal this time to use between the twice daily Restasis.  I really like the Genteal.  The dryness had gotten so bad that I'd wake with my eyelid stuck to my eyeball and it felt like I had a stick stuck in my eye.  None of the OTCs worked for more then 5 minutes, but after being on the Restasis for a little while, it is much better and the OTCs now help more.

[Billie Murawski]

I use refresh and systane ultra, works pretty good for me.    Good Luck Billie

[Catopounce]

(diagnosed September 2013, 400 mg Imatinib daily) I've had dry eyes since March of this year. The Optometrist (in BC, Canada where I live you can't see an MD unless you have serious eye problems) first recommended lubricating eyedrops, then prescribed Restasis, extremely costly but my extended benefits from my job pay for it. I wasn't given too much instruction on how to use the Restasis drops. I used the drops twice a day, and it took 3-4 months to  start working. (I had been told this would be the case)  and when my eyes seemed to return to normal, I stopped the drops. According to the Restasis website you're supposed to take the drops indefinitely, which was not made clear at all by the Optometrist.   So I've had to start all over again. My eyes are dry, tearing, smarting, light-sensitive, itchy, and red. The Optometrist doesn't know anything about Imatinib so couldn't confirm that it is the cause of my dry eyes. I'm waiting for the Restasis to kick in again. I've read online that it only works for a fraction of dry-eyed patients. I'm sure it worked for me but will have to wait another 3 months to see for sure. I also use Systane ultra from Costco to manage symptoms. Restasis is cyclosporine, an immuno-suppressant.

 

To make a long story short, Restasis works for me, but you have to be consistent with it. A hot compress

(microwaveable gel pack from drugstore) soothes when your eyes are too uncomfortable. 

[tiredblood]

A pharmacist told me that I'd probably have to use the Restasis indefinitely.  I didn't think to ask the ophthalmologist, but will at my next visit.  Sounds like an indefinite thing.  I was surprised when the pharmacist said it was okay to use with the TKI.  I guess it is so expensive since it is the same drug used to prevent transplant rejection, except in an ophthalmic solution.  I have no doubt the dryness is from the TKI, along with the dry hair, skin, and mouth.  I've used it since 9/2 and still tear up, but am thankful that my eye doesn't hurt every morning when I get up.  Sometimes it felt like they ached.  I was told after testing that my eyes were moderately dry.  I can't imagine what severe dry eyes would feel like.  Anyway, I guess I perceive some benefit after nearly one month.

 

Thanks for everyone's comments.

[Gail's]

So glad to know what may be causing aches in my left eye. It's weird to call it dry eyes though when that eye is frequently watering. Please explain how you could have dry eyes with a watery eye.

If I hadn't gone to the ophthalmologist for the pain, I wouldn't have known about the tiny eye bleed I have and just assumed the pain was caused by that. I'll ask the ophthalmologist about dry eyes at my next appt.

[tiredblood]

This is what I read on one website about the excessive tearing: "And it may seem odd, but dry eye syndrome also can cause watery eyes. This is because dryness on the eye's surface sometimes will overstimulate production of the watery component of your tears as a protective mechanism."  The nurse at the ophthalmologist office also told me that excessive tearing was a sign of dry eye syndrome.  

 

At the ophthalmologist office, they performed a Schirmer test that measures tear production.  I was told that my left eye measured worse than my right eye, although it was my right eye that felt like it had something either in it or it was scratched or something.  I was given a prescription for Restasis and Lotemax (an ophthalmic corticosteroid drop), and was to use the Lotemax x10 days.  The day I decided to go to an ophthalmologist, I had had enough of waking with my eyelid stuck to my eye and the pain.  It sort of scared me that morning because I knew it was not getting better, only worse.  Plus, I had read the posts about eye hemorrhages, so I thought I should get it checked out.  Thankfully, no eye hemorrhages as far as I know.

 

This could be from menopause, but it does coincide with my extremely dry hair, skin, and mouth, so I'm leaning more toward the TKI as the cause.  And, yes, my eyes have a dull ache when they are at their driest.

 

What do doctors do for eye hemorrhages?

[Gail's]

Not real sure about all the treatments for eye bleeds but I think the bleeder can be zapped with a laser to seal it. Not sure what it means as far as loss of vision. Scary to me. I see the ophthalmologist in 3 weeks and will have some questions and hopefully good answers.

[Frogiegirl]

I have been on restasis since 7/8/15 with no change just blurry vision for an hour or so after I use it. I did some research and am now trying preservative free single use eye drops. I have noticed a difference with those. the price of restasis is crazy just like our TKI's but not to worry if you fill it after you reach your deductible right???   I'm going to use restasis a little longer to give it time, but geeeeezz the price is ridiculous  

[Kali]

I have had dry eyes more recently. Most probably TKI related. My ophthalmologist said the biggest problem he sees with his dry eye patients is not using the drops often enough. I was using twice a day lubricant (soothe). He said bump it up to every couple of hours. This helped a lot. He also gave me a stronger steroid drop than lotemax for a two week head start. Now I just do Soothe.

[Kali]

Realized I forgot to add that I have had eye bleeds as well. It happens for awhile and then I quit having them. Then they come back again. They clear up on their own in a few days. Also what my ophthalmologist said about using lubricants more often is just what he told me. I am not saying that is what anyone else is dealing with. I just know when I started
using them more frequently during the day it helped.

[Billie Murawski]

I have found that when I clean my glasses my vision improves immediately .

[Gail's]

Anyone have a bleed inside the eye, not just surface? The bleed I have is at the back of the eye near the optic nerve