Naltrexone drops

[neilw]

Hi Mandy,

This is Neil's wife, Kathy. I'm 60 have had severe ocular rosacea for 6 years. I currently use Restasis and Acuvail preservative-free NSAID drops twice a day, Hylo-Forte as needed and have IPL treatments every 6 weeks. The Naltrexone gave me some relief for the 3 months I used it and I will continue to use it intermittently in future. In fact the IPL/Naltrexone combination gave me the most comfort I have had in the whole 6 years. I used to use preservative-free steroid drops but as my cataract is, due to its rapid growth, most likely steroid-induced they are out. Naltrexone gave me marginally more comfort than the steroids anyway and will probably prove to be less harmful in the long run. I am lucky in that my ophthalmologist is not only willing to push the boundaries for his dry eye patients but is also well known for complex cataract surgery. He thinks he will be able to mitigate the risks for me with a combination of preservative-free post-operative drops and IPL just prior to the procedure. Hope he's right. I don't use moisture chambers in the house as I need a prescription in them to see properly and my vision is changing too quickly to have one put in. Outside I use Wileys and travel in the car in Tranquileyes. I have never worked out why car travel is such a problem.

Practically, the Naltrexone allowed me to read more comfortably, (I normally listen to audio books), and catch up on movies and TV series I'd been wanting to see. Usually by the end of a longer work day I'd be in misery, but I was able to enjoy my job for a change, not pain-free but definitely more comfortable. I think if I were to try to quantify it my comfort improved by about 20% with IPL and another 20% with Naltrexone, not miraculous but I'll take anything.

Sorry to read about your migraines. And you're right about the stress, it's about time someone researched the link between our stressful modern lives and dry eye. Neil and I are travelling to Myanmar in September, he's looking forward to seeing the sights and I'm looking forward to the 90% humidity!

Look after yourself,
Kathy

[Amanda]

Hi Kathy,

Thank you so much for sharing your story with me. I am sorry you are suffering, but am so glad to hear your dr. is very willing to work with you and push the boundaries. A complex cataract surgery specialist is a bonus for you! I think it is very important that our dr.'s are willing to work with us and try new things as dry eye is so complex. There are so many different causes, different types, etc. that what might have worked for one patient may not work at all for the next. I am always showing my dr. new articles and asking her about new treatments. I have been trying the DHEA drops for about 5 weeks now but it just stings so much when I put it in and last week I had a really bad incident where it stung so bad I had to wash the eye out completely. So, I stopped the DHEA as of today. Maybe next appointment I will see if she will prescribe the naltrexone.

I am not familiar with acuvail? I will research it! Is the Hylo-Forte the steroid? I used some steroid drops when I was first diagnosed with dry eye (18 years ago) and it was heavenly. Made my eyes feel completely normal. Unfortunately the long term effects of steroids are not great so I haven't tried them again in years! Did you use the Hylo-Forte long term? If I can ask, what type of relief did you experience from the naltrexone and what type of pain is associated with ocular rosacea? In the past year my dry eye has progressed to cause my eyes to burn and sting a lot. I currently use Restasis 2x/day, refresh plus drops as needed, refresh celluvisc at bedtime along with Azasite rubbed along my eyelash line. I was recently quadra-plugged (plugs in lowers and cautery in uppers). Both eyes experienced epiphoria for a bit...but now only my right eye is. My left upper puncta cautery reopened once but when the epiphoria stopped earlier this week I was convinced it had opened again. My dr. said it has not...so my right eye is still super watery, while my left eye is not. When both had epiphoria it was great...it didn't bother me. Now that only one has it it brings my anxiety back b/c I am concerned about why the left isn't tearing anymore...ugh, the life of a dry eye patient. Sorry to rant about that. Have you ever tried guard dogs? They are not the prettiest, but they go over your prescription glasses. I wear them inside at night b/c I have yet to pay for a wiley with clear lenses. My family is used to them and it provides me much needed "comfort."

Also, I haven't tried IPL...or read much about it for that matter. No dr. has been able to explain why this happened to my eyes...but my dr. thinks I am more aqueous deficient than having MGD. I wonder if IPL works for aqueous deficient?

And agreed...stress and dry eyes are linked...I know it. I feel like it is an endless cycle of stress, anxiety, dry eyes, meditation, yoga...each day takes so much effort to simply do all the the things necessary to help me forget about my eyes, to make the anxiety less, the pain less and be productive. Myanmar sounds great! I love humidity. Summer days are so much friendlier to the eyes than winter days (especially in Wisconsin). I hope you have a wonderful trip and experience relief while there.

Good luck with everything!
Mandy

[Amanda]

One more question SAAG and Kathy,

Did the Naltrexone drops sting or burn upon application. I'm having a lot of trouble with the DHEA doing that, enough so that I have discontinued use for a few days to see how my eyes feel...

[neilw]

Amanda,

It is Neil writing again. Kathy is at work today so I will try to answer your questions for her.

• Acuvail is a preservative free NSAID drop (active ingredient is ketorolac tromethamine). It is made my Allergan and is available in the US but not here in Australia. Kathy gets it sent to us from an international pharmacy in the States. They will do this if we send them an Australian prescription.
• Hylo Forte is not the steroid. It is just a standard preservative free eye drop which Kathy uses throughout the day. It’s active ingredient is Sodium Hyaluronate which is very soothing. I think it is derived from the “lubricating fluids” found throughout the body though it is a manufactured version of it. I do not think it is available in the US but it is in Europe (I think). It is very popular with dry eye sufferers in Australia now although it is more expensive than other drops.
• The steroids Kathy was using are Pred Minims which are in preservative free vials and contain prednisolone. Again, I understand that they are not available in the US.
• Naltrexone gave Kathy instant relief. It did not last all day, but it did last a fair bit. She was not 100% better with it – I think she says she felt about 20 to 30% better.
• IPL is thought to be better suited to people with MGD and with Ocular Rosacea in particular. This is because IPL is applied on the cheeks near the bottom eyelids and the hope is that it will help to re-activate and unclog the Meibomian glands in the eyelids. From what we have seen it does seem to do this very well – the issue is how long they will remain unclogged before another treatment is needed. For Kathy at the moment 6 weeks seems to be about the time for another treatment. However, we do know of someone who had post-Lasik dry eye and principally aqueous dry eye. She was so bad that she hardly left her home and had to give up work. She was only in her mid twenties. After 2 treatments with IPL she was able to go back to work and was a lot better. So, IPL maybe worth a try for you. If you google “Toyos Clinic” you can contact his office. Dr Toyos has trained a lot of doctors around the US in the use of IPL and they will be able to tell you a doctor close to you, I think.

I hope I have answered most of your questions.
Cheers.
Neil

[Amanda]

You sound like a wonderful, caring husband Neil! Nancy is lucky...although I understand it is probably very difficult for you. I just give you props. My partner isn't the best at empathy

Thank you so much for the information on the eye drops. I am going to look into some of them to see if I will purchase them! I will especially push my dr. about the naltrexone next time I am in.

As for the IPL, my dr. and I have never discussed. Again, I will ask her about this! It sounds very promising in the Aqueous dry eye example you gave. I will also look into Dr. Toyos.

I am so glad some of these treatments have helped your wife. The two of you sound so genuinely nice

I appreciate your information!

Have a great day,
Mandy

[bohmaniac]

Is naltrexone supposed to be used orally or topically as an eye drop. I have read both so I am confused.

[Guest]

Topical eye drop

[PotatoCakes]

I haven't read the entire thread so forgive me if this has already been answered ... I notice that you are off the Naltrexone, and therefore don't need a fridge for your eyedrops. Are you also off the Serum drops or do somehow yours not require refrigeration (a dream come true!)?

[Guest]

I'm also off the serum drops now. If I wasn't still traveling, I'd have stayed on them longer, but since I was able tolerate life without them, it made sense to simplify things.

[RFREITAS]

SAAG seems like SA has been a life chaging!!

Where you diagnosed with neuropatic pain?

Have fun and enjoy life!!!

[Guest]

Where you diagnosed with neuropatic pain?

Yes, Dr. Rosenthal thinks I likely have a neuropathic component to my eye discomfort. But of course, all we can do is speculate, since there is no 100% sure way to diagnose it.