Naltrexone drops

[neilw]

My wife has just started using these twice a day - a doctor here in Australia wrote a script for them and she got them compounded at a pharmacy in Sydney. We had heard a few good things about these especially for treating the neuralgia associated with dry eye. But there really seems to be little information available. The doctor here said he did not think they would do any harm and would be "worth a try".

So far, after just over a week, they seem to be helping a bit. But we were wondering if anyone else has had experience with them. Particularly, if my wife continues to find them beneficial, she is wondering if there are any long term side effects that need to be considered.

Any information will be gratefully appreciated.

[Guest]

Dr. Rosenthal (used to be at Boston Foundation for Sight) told me that there is a theoretical risk of "serious complications" including irreversible corneal swelling (you'd notice that your vision was blurred apparently), and cataracts with the use of naltrexone drops. At the time of this e-mail exchange (March of last year), he had not had a patient on naltrexone drops actually develop these complications to the best of his knowledge, so they remain theoretical risks.

He also said he's never had a patient on them as long as I've been, so has no way of knowing what the true risks are of continuing the use of these drops for as long as I have been.

Because of this, he cautioned me to stop them if at all possible. It's good advice.

However, since my eyes got much worse without them (and quality of life takes a massive nosedive), he said if I insist, he will agree to continue prescribing them for me. This is uncharted territory in terms of complications, and I am definitely taking a risk of unknown proportions the longer I remain on them. Consequently, I will continue to do trials without them to see if I can get away without using them, and not suffer a massive decrease in my quality of life and ability to use my eyes.

[neilw]

SAAG,
thanks very much for the response. I wonder what Dr Rosenthal has based this "theoretical risk" on. Perhaps because naltrexone is similar to something else where these complications have occurred (????).

Kathy has only just started on them but it sounds as if, even if they prove to be beneficial, it would be wise to use them with caution.

[Guest]

Usually theoretical risks are based on the mechanism of action for the drug - in the case of naltrexone, they are not 100% sure how it works, so that adds even more mystery to the situation.

[zoso967]

Hi Saag, can you tell me how long you've been on Naltrexone drops? My Dr just wrote an rx for me today. Also, do you know what concentration you're on and if you don't mind telling me how often you take them?

Thank you

[Guest]

Hi there!

If you do a forum search for posts by me and naltrexone, you'll find everything I ever posted on the subject

But I'm pretty sure I started around March or April 2012 (check my past forum posts to be sure) - I used the 0.0035% twice a day (also check past forum posts to be sure).

I stopped using them about a month ago, since I am now ok without them. Finally!

[Amanda]

Hi SAAG and NeilW,

Where do you get your naltrexone eye drops. My dr. hadn't heard of them. I was just on the phone renewing my prescription of my DHEA drops and asked about them...they said they do not make them there?

[Guest]

I was getting them from Dr. Perry Rosenthal - I saw him at the Boston Foundation for Sight - he prescribed them via Leiter's Pharmacy in California (they ship internationally)

Perhaps reach out to Dr. Rosenthal via his website (he is no longer with BFS), and see if he can provide you with links to some research on the use of naltrexone drops for dry eye. Then you can bring that info to your dr, and if he/she agrees to prescribe them, can send the prescription to Leiters (they have the recipe to make the drops... odds are any other pharmacy you contact will tell you they have no idea how to make them, so save time and trouble by going directly to Leiter's Pharmacy)

Worst case, if you can't get in touch with Dr. Rosenthal via his website, try doing a search for studies on PubMed's website... maybe something will turn up there - although if memory serves me correctly, everything I found on there in the past was regarding taking naltrexone by mouth (so nothing to do with dry eye, and no help whatsoever)

Anyhow, good luck!

Oh, and if you reach a dead end, perhaps start a new thread titled something like "Need to find doctor who prescribes naltrexone drops" - I'm sure you'll get some replies - ie. if you can't find the information you need to make your regular doc comfortable prescribing them, maybe you can get the info from another dr, or even fly out and see them if you have to.

[Amanda]

[QUOTE=SAAG;96894]I was getting them from Dr. Perry Rosenthal - I saw him at the Boston Foundation for Sight - he prescribed them via Leiter's Pharmacy in California (they ship internationally)



Hi SAAG,

Thank you for the info. I realized I forgot to note that it was Leiter's pharmacy I was on the phone with yesterday about the DHEA drops who told me they don't make the naltrexone. I will try to contact Dr. Rosenthal and if I can't get ahold of him will look up articles. Thank you so much for the great suggestions!

can I ask what type of improvement you received with the naltrexone and why you stopped using them? I read your thread that said you stopped using them b/c you didn't feel you needed them anymore, but what type of improvement did you experience? And how are you feeling overall these days?

Did you ever try DHEA drops?

Your condition (from what i have read in your posts) sounds fairly similar to mine (more aqueous deficient and a little MGD...however mine wasn't caused by LASIK, it just happened when I was 19 and no dr.s have been able to figure out why!).

Thank you,
Mandy

[Guest]

Hi Mandy,

I didn't know that Leiter's stopped making them - were you talking with someone in their compounding department? (Just thinking that if were the regular pharmacy staff, maybe they didn't know about naltrexone drops...)

Anyhow, I stopped using them because my eyes were finally able to tolerate life without them, and still be highly productive on the computer (as in, I was able to write and self-publish 2 bestselling full-length non-fiction books on Amazon under a pen name, plus get work as a freelance writer, set up my websites myself etc.). I suspect that if I were still on the naltreaxone drops, I might be doing even better, but, there are no long-term studies on their use and I'm only 39... so who the heck knows what they might do to my eyes if I used them for, say 50-60 more years? (Yup, I have plans to live a long life hehe).

So IF I was the way I was when I first started them still, the 100% certain (for me, anyhow) benefits from using them outweighed the unknown risks of using them. It was a choice between life where I was not functioning well at all vs. using the drops and being able to do a lot of the things that were impossible before.

Now, however, my eyes have improved after being in a very humid tropical climate for a solid year (I highly recommend this to anyone currently suffering through dry winters or living in a desert climate). So my choice is now between eyes that still need a lot of babying (moisture chambers, restasis, artificial tears, ointment overnight etc.), but are very functional and allow me to work on the computer as much as I please, vs. doing even better by using the drops but risking unknown adverse effects in future.

So since my eyes are functioning well enough to do the things I want/need to do without naltrexone, there is no longer a compelling enough reason for me to continue using the drops.

Oh, and exciting development: I no longer have to keep my eyes shut for my entire time on an airplane (to protect them from dryness and severe flare-ups as a result) - I can even tolerate watching a MOVIE on the plane, as well as playing those video games they sometimes have on those TV screens

And as a bonus (NOT the reason I stopped the drops at all though), I no longer need to worry about always booking accommodations that have a fridge/freezer to store them in (we've been traveling full-time since July 1 last year... SE Asia is extremely affordable).

I've never tried DHEA drops.

[Amanda]

Hi SAAG

Well, I talked with someone in the pharmacy department at Leiters. That is a good suggestion on talking with the compounding department. If my Dr. and I decide this is something we want to try I think she will give Chuck Leiter a call. She says he has been incredibly helpful for her. I think I, myself, might ask to talk with him next time I call as I have also gotten different information when speaking to different people at Leiter's as to the length of time I can use the bottle of DHEA I bought. Some say 90 days, while others say 30 days. Each bottle (with delivery) is $140 and for my budget that is steep...but comfort in my eyes is worth it.

That is fantastic that your eyes were able to tolerate life without the naltrexone, and still be highly productive on the computer. I use the computer all day long at work and have found that wearing moisture chambers (of which I just finally got my first pair 2 months ago) are awesome. I haven't invested in ones with clear lenses yet (as I still have to get them with a prescription and the price is steep) and so I sit at work looking like I'm in the Matrix all day. My coworkers are used to it by now. I'm not shy!

As for being able to write and self-publish 2 best selling books...i might have to do some sleuthing to find them as I love non-fiction books! I assume you are able to travel for so long b/c you have a job you can do from anywhere! I am jealous as SE Asia sounds AMAZING (as does a humid climate...although it is summer in WI right now, so we are good on the humidity for a few more months!). Moving to a humid climate is not an option for us right now as we have 2 kids in high school who do not want to move and we have an old arts and crafts home that we have put a lot of blood, sweat and tears into renovating! I am hoping that eventually, we will start spending winters in a humid climate and rent out our house during that time...and spend the spring, summer and fall in Wisconsin.

And to the worry about long-term impacts. I have the same thoughts for sure, but getting to a level of comfort, first, is important for me (as it was for you, it sounds), to be able to live a SANE and productive life. I am 37 (diagnosed at 19 with NO dr. able to tell me what the cause of this is...) and want to live for many, many years. I have TOOO many things I want to do yet in this life!

I too use restasis, artificial tears and moisture chambers. I don't use ointment at night, but I might start trying that. I also use azasite on my lashline at night, which I think really helps (even though I only have mild MGD)...I was without the azasite for one week and I noticed a huge difference.

This is VERY exciting about airline travel since it sounds like you are doing a lot of it. My husband and I went out dancing last weekend and I decided to put makeup on...it was fine for a night, but my eyes definitely weren't as comfortable yesterday and today. And what is funny...it's been so long since I have worn eye makeup that when I took it off I liked how I looked so much better. So glad I am finally comfortable with no eye makeup!

Yes, finding a fridge/freezer can be hard. I like to refrigerate my restasis after opened as my dr. said I can do that and reuse the vials over a 24 hour period or so (keeps the cost down for refilling restasis), but many times just finding a refrigerator is a pain!

Anyways, I look at this curveball life threw us all as a character building challenge (not to say that I don't have extreme anxiety about the future and bad days...I definitely do). Ideally, I hope they find the eye drop or medicine or whatever else they are researching to make us VERY comfortable all day long. I actually love my moisture chamber glasses for outdoor activities (we love to bike, hike and canoe)...putting the strap on makes them true goggles and my eyes are so protected, it is great!

Enjoy your SE Asia adventure...and hopefully that will be one of our humid destinations one day!

[Guest]

We're very close in age then - I'm 39

I don't actually have a job per se... I worked in the health care field prior to traveling... will be working another 6 weeks this summer actually (just enough to keep my practicing license active... as a back-up plan, in case we ever need to go back to normal life hehe). So I'm trying to make a job for myself, via building up an online business... which I know, sounds insane and flaky... but in the past year, I've already replaced half of what I earned working part-time in my "real job"... I figure by the end of another year, if things continue to go well, I'll have replaced all of it and will be free for good, I hope. I doubt you'll find my books though - they're written under a pen name and the only things connecting me to them are revealed in private (pay to access) members-only forums.

Your plans for escaping into a humid climate over the winters once your kids are bit older sounds great - I hope the humidity helps you as much as it does me! We're lucky our kids are younger and enjoy traveling - they are both adamant that they do NOT want to go back to normal life hehe

re: makeup - Yeah, I don't wear it anymore either - I used to be the kind of person who never left the house without it, but to be honest, it's been long enough without it now that I now feel like the benefits of not wearing any (saving time) outweigh any benefits of using the stuff.

I love my moisture chambers too - I also bought a good pair of swimming goggles for the first time last year - they are a godsend - for example, I've been boogie boarding in the ocean most days for the past week, and although I look very strange wearing swimming goggles for that (NOBODY else wears eye protection of course), they mean I can actually enjoy this activity since they protect my eyes from the water and wind. Whereas without the goggles, I'd have to sit on the beach in my Wiley X sunglasses. BOOOOOR-ING!!!!

I ought to look into Azasite - I do have mild MGD also, pretty well controlled via diet (which controls my rosacea and intolerance to wheat)... but I can always use a bit more help

[neilw]

Amanda
I am sorry I had not answered your question earlier but I have not been looking at the DEZ much lately. We are in Australia and we get the Naltrexone drops from a compounding pharmacy called Custom Care in Sydney. We also get them made up at 0.0035% but that was based upon the information I had earlier read about what SAAG was doing.
My wife Kathy tried the drops in the end for about 2 months and found them very helpful. The ophthalmologist here who prescribed them for her then asked she go off them for a month or so to really test if they were beneficial. Kathy's eyes have been worse since she stopped using them but we are not 100% sure it is just because of stopping the drops. At the same time Kathy has developed a very fast growing cataract in one eye and will need surgery pretty soon. The worry about the surgery making her dry eye worse has caused a lot of stress and this will have made her eyes worse.
We too are concerned about long term use of the Naltrexone - I don't think Kathy has decided whether or not to go back on the Naltrexone at this stage.

SAAG
I wanted to ask you a bit more about your time in SE Asia, but I will post this on your sticky thread which is a more appropriate place.

Neil

[Amanda]

SAAG -

Yes, we should keep in touch as we are close in age and both seem VERY determined to not let this disease control us, but rather WE will control the disease

I love that you don't have a "job per se." My goal is to figure out how to "retire" from the daily office environment as long as possible. I have too many law school loans to do that in the next few years, but I am devising a plan I would LOVE to develop my own job... I really enjoy diy interior design and home projects, as well as quilting, etc...making a career out of that would be awesome (however, I don't think I am the only one who enjoys this so there is a little competition out there) So, we can both be flaky in that way!! Online business is VERY "in" these days...and it allows you to travel and live in S. Asia...how AWESOME! The main problem is that my spouse also has his own business and he has 2 kids (my stepkids who live full time with us) and I have this chronic annoyingness going on so one of us has to have insurance (and my job has a REALLY good plan that is not expensive at all) I'm sad I won't be able to find your books...

yes, no makeup saves so much time!

Ooooh, swimming goggles sound awesome. We go paddleboarding and swimming alot and I'm always worried about getting my wiley inserts wet all the time! I take them off right now when I jump in but then I'm so worried about those $400 prescription glasses falling to the bottom of the lake!

I really do think Azasite helps!

You noted on another post that your tear overflow subsided after having your puncta cauterized. Is that still the case. i'm trying to figure out of the subsiding of this in my left eye is due to a terrible migraine I have had for days, or if it is just not going to overflow anymore. The right eye still is overflowing a little. The thing is, my schirmers in my right eye last time was 2mm and my left was 5 mm. hmmmmmm??? The lovely paradox we face with every dry eye situation, right?

Thanks for answering my questions and sharing what you have learned!

[Amanda]

Neil,

Not a problem! I understand the need to be away from the computer even if you don't have dry eyes! I have lately been really interested in the association of chronic migraines and dry eye (I suffer from both) and have been talking with both my neurologist and ophthalmologist about it (in different forms - pill and drops). My eye dr. hadn't heard of using it. My neurologist said that use of naltrexone hasn't been approved and is not yet "currently recommended by professional societies...although there have been some peer-reviewed published studies on it in the US for chronic pain use.

If I may ask, in what ways did Kathy find relief? Ugh, I am so sorry about the cataract. Please keep us informed of how that impacts her issues. What has the dr. said about the possibility of making her dry eye worse? I completely understand the stress you are going through thinking about this. I think my brain creates half of the pain i'm feeling due to stress and anxiety.

Good luck and thinking of you and your wife.
Mandy