Dry eye syndrome

Posted by besmith57 @besmith57, Jun 11 10:44am

Once again I've fallen into the abyss of no Dr. has answers for PMR. I was sent to a cornea specialist whom I saw yesterday. She had no idea why I was suffering from dry eye or what to do about it besides drops and ointment. She prescribed an eye drop that may or may not work for $295 a month. I chose not to fill it. Will there ever be more answers available from doctors? I love this site but having PMR has left me so depressed!

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@janiceem

I've had dry eyes for many years prior to PMR. I have taken flaxseed oil for many years, which seems to help me. Here is what NIH concluded for the dry eyes in Sjögren's syndrome:
"Conclusions: Therapy with oral flaxseed oil capsules 1 or 2 g/day reduces ocular surface inflammation and ameliorates the symptoms of keratoconjunctivitis sicca in Sjögren's syndrome patients. Long-term studies are needed to confirm the role of this therapy for keratoconjunctivitis sicca in Sjögren's syndrome."
https://pubmed.ncbi.nlm.nih.gov/17906762/
Note: I currently take 1000 mg. of flaxseed oil (contains ALA omega 3's) and 715 mg. of Omega 3 from Nordic Naturals Algae omega (EPA and DHA omega 3's). You can also get DHA and EPA omega 3's from fish oil, but you risk mercury contamination. Fish get their omega 3's from eating algae. The Standard American Diet (SAD) is very low in omega 3 content due to our ultraprocessed diet.
I also use Systane Ultra drops twice daily and massage my lower and upper eyes immediately after placing the drops. I've tried the other Systane products and they tend to irritate my eyes for some reason. BTW, my optometrist stated that my retinas looked great!

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Good info. My cornea specialist recommended I take 2000 mg fish oil per day and I have for years. Wonder if flaxseed is better…?

I don’t find drops very helpful, though I do use ointment at night. I’ve switched from Systane to Genteal.

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@celia16

Good info. My cornea specialist recommended I take 2000 mg fish oil per day and I have for years. Wonder if flaxseed is better…?

I don’t find drops very helpful, though I do use ointment at night. I’ve switched from Systane to Genteal.

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My opthalmogist recommended muro 128 for me. They are expensive so I ordered the generic this time. I hope they work.

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@celia16

Good info. My cornea specialist recommended I take 2000 mg fish oil per day and I have for years. Wonder if flaxseed is better…?

I don’t find drops very helpful, though I do use ointment at night. I’ve switched from Systane to Genteal.

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Fish oil will contain more DHA and EPA omega 3's, which are probably in shortest supply in your diet. I prefer to get mine from an algae source to avoid ocean contaminants. I do know that when I took more of the DHA and EPA that my skin bruised much more easily, so I cut down to just 715 mg. of it, along with 1000 of flaxseed. Here is a good article about the differences in the omega 3's: https://my.clevelandclinic.org/health/articles/17290-omega-3-fatty-acids .
Thanks for the info on the ointment.

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@janiceem

Fish oil will contain more DHA and EPA omega 3's, which are probably in shortest supply in your diet. I prefer to get mine from an algae source to avoid ocean contaminants. I do know that when I took more of the DHA and EPA that my skin bruised much more easily, so I cut down to just 715 mg. of it, along with 1000 of flaxseed. Here is a good article about the differences in the omega 3's: https://my.clevelandclinic.org/health/articles/17290-omega-3-fatty-acids .
Thanks for the info on the ointment.

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Interesting. I do bruise easily, and bleed easily. I will check with my doctor about the flaxseed.

I have tried all brands of ointment. My doctor says it’s important to avoid preservatives. For me, a huge issue is how well the ointment comes out the tube and into your eye. Most are not cooperative in their application. Systane used to apply well, but not lately. It’s the most expensive imo. I used to like Walgreens brand, but it changed. Now, Genteal seemsto be working well.

It’s annoying to have your eyes greasy in the morning, but it’s worth it. If I have to drive first thing, I don’t use it the night before. I think you’ll see a big difference. Just confirm with you doctor it’s ok,

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I use Genteal after a nap. I just bought a heated eye mask to make sure my lids are closed. I've only used it once, but it keeps the ointment in the eye and not on the pillowcase.

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My eyes are extremely dry but also very very reddened and bloody, even the rims of my eyelids are red. I look like I have a really bad case of pinkeye. It's awful. Been this way for about 18 months now. Have seen 3 ophthalmologists with no success.

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@susanew

The dry eyes could be a reaction to the prednisone. I have had that reaction as well and also to high blood pressure medication and to an acid reliever. Try using Refresh over the counter sterile eye drops. I use the individual tubes that come usually 100 to a pack. My ophthalmologist said it was safe to use and you can try it twice a day or once to see if you get some relief. Hope that helps.

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Interesting as there are many steroid eye drops that are used for dry eye.
I also use Refresh Artificial Tears but not the natural ones. I have scratched my eyes one too many times on that sharp opening. I have no problem with the regular Refresh but other drops that folks love irritate my eyes beyond belief. I was told to only use artificial tears, never "eye drops."
My dry eye became a real problem about 12 yrs ago. Out of the blue or so it seemed. I was at work and my vision went blurry. Saw my eye doc and he immediately told me I had mgd. Compresses were recommended and we tried Doxy in case it might work, but alas, no. After about a year or so, I could not longer wear eye makeup, began getting little growths here and there in and round the lids, which I had removed. Some I could remove myself, lost most of my eyelashes. ETC. I saw every dry eye "specialist" I could find, but no help. Still today, no one has answers. I would like to try Restasis. I don't think there's any relation to PMR, if, in fact, that's what I have but who knows.
Since the PMR started, I have had yellow speckles in the corner of both eyes but again, 2 docs just blew it off. 1 said it was definitely related to whatever is going on in my body but she doesn't know what's going on except that 2 cytokines are elevated. And she offered LDN. Which I may go for since I can't take steroids. I am seeing a new rheum today and just so fatigued with talking about this. If he pushes steroids, I'll have to just cut ties anyway. I really need this guy to drain my Baker's cysts or whatever they are...they're causing most of my discomfort along with shoulders and upper arms at present. Take care.
Sorry to vent but hope this is helpful to you or anyone who reads it. Best of luck on your journey.

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@glinda47

Interesting as there are many steroid eye drops that are used for dry eye.
I also use Refresh Artificial Tears but not the natural ones. I have scratched my eyes one too many times on that sharp opening. I have no problem with the regular Refresh but other drops that folks love irritate my eyes beyond belief. I was told to only use artificial tears, never "eye drops."
My dry eye became a real problem about 12 yrs ago. Out of the blue or so it seemed. I was at work and my vision went blurry. Saw my eye doc and he immediately told me I had mgd. Compresses were recommended and we tried Doxy in case it might work, but alas, no. After about a year or so, I could not longer wear eye makeup, began getting little growths here and there in and round the lids, which I had removed. Some I could remove myself, lost most of my eyelashes. ETC. I saw every dry eye "specialist" I could find, but no help. Still today, no one has answers. I would like to try Restasis. I don't think there's any relation to PMR, if, in fact, that's what I have but who knows.
Since the PMR started, I have had yellow speckles in the corner of both eyes but again, 2 docs just blew it off. 1 said it was definitely related to whatever is going on in my body but she doesn't know what's going on except that 2 cytokines are elevated. And she offered LDN. Which I may go for since I can't take steroids. I am seeing a new rheum today and just so fatigued with talking about this. If he pushes steroids, I'll have to just cut ties anyway. I really need this guy to drain my Baker's cysts or whatever they are...they're causing most of my discomfort along with shoulders and upper arms at present. Take care.
Sorry to vent but hope this is helpful to you or anyone who reads it. Best of luck on your journey.

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Have you been evaluated for Salzmann’s nodules? I have that.

Also, you might get your B12 level checked before you take the vitamin. It seems that deficiency has been aggravating my eyes for years.

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@celia16

Have you been evaluated for Salzmann’s nodules? I have that.

Also, you might get your B12 level checked before you take the vitamin. It seems that deficiency has been aggravating my eyes for years.

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Thanks, Celia.
My B12 is fine, near the top of the range actually.

I don't have Salzmann's nodules to my knowledge. Just had a thorough check-up.

Hope all goes well for you, Celia!

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