LDN therapy for autoimmune dry eye - Sjogren's

[painintheeye]

Hi everyone,

I just got back from a checkup from my ophthalmologist and I was told that my eyes are normal. In fact, better than women my age (46). I contribute this to using LDN (low dose naltrexone) therapy for over 3 1/2 years.

I've had one person PM me and accused me of being a hoax just because 1) I don't hang around much anymore 2) not many people documented about it on this forum, etc. I don't think I need to justify myself for researching and successfully using an alternative treatment that works for me.

LDN practically saved me from a foreseeable life of misery and pain because there is no cure nor viable treatments for autoimmune diseases.

I am grateful for all the help and support I get from this forum. I learned so much. My decision for not actively participating in the forum is a selfish one. Everyone of you reminded me of how I used to be before. I was in such a dark dark place. Since I regain my health, I decided to look forward instead but I am happy to share my experience with those who may need just 'one more' thing to try.

So, thank you all, especially Rebecca, for reaching out to me across the Pacific oceans to let me know that there is hope.

Best regards,

Chris C.

[boston]

I'm wondering if this coulod work for me.
I am post-Lasik DES.
However, I feel I have symptoms of Sjogren's (Is there an easy and reliable diagnosis method for sjogren's)

Also, when I took percocet for about a week after a surgery, my dry eye went away, and my eyes were amazing! I dont know if that could tell me anything about LDN (the anti-opiate substitute or what not)

[Guest]

So glad to hear you're doing better! Thanks for posting the update!

[calli66]

Hi there!

I tried LDN for two months this year in Jan and Feb, and it actually helped my eyes make more tears. Congrats on your success. I stopped using it in March because I started to have arrhythmia problems (probably Sjogren's or thyroid related) and wanted to eliminate as many variables as possible related to that. Also I don't have a doctor who approves of my using it, so I either have to hide the fact I'm using it (when I go to my appointments) or else tell the doctors and receive their disapproval. I'm not comfortable with either option.

Also, I had some weird dreams (but not as bad as the ones I had when on Plaquenil) and jumpy restless sleep while taking it, which made me unsure about whether it was the right thing to do. I worked up to 3.5 mg a day with no negative side effects other that the dream/sleep ones.

It was rather good during that 2 months, though. My vision was much better (because of the extra tears), and eyes more comfortable. But....since my eyes are pretty stable without LDN, I don't really NEED to take it.

Calli

[20/20_Hindsight]

I would really like to learn more about this. Where do you get it, and do you have to have a doctor prescribe it? I have autoimmune disorder, and then Lasik pushed me over the dry eye cliff over 10 years ago. This is one thing I have not tried or looked into, and don't know anything about it. Can anyone help point me in the right direction? Thanks!

[calli66]

20/20---

You can find info on the web, but like most web sources about "alternative" uses of meds/supplements, it's difficult to know if you have legitimate information. If you use the search engine Google Scholar, using various search terms---LDN, autoimmune, etc.----you should be able to find what you need. LDN use has been important for people suffering from MS and Crohn's, as well as fibromyalgia. The studies have been done in university research labs and private labs, but they are not well-funded and the group size is small. Still, there is a scientific basis to the premise that LDN works by stimulating endorphin production, which helps balance and modulate the immune response. People with auto-immune diseases seem to have lower levels of endorphins.

I belong to a Yahoo Group focused on LDN. There is a noticeable tendency for people suffering from just about any malady, to think that LDN might help, and so there is complementary commercial/quackery rhetoric promoting it as a cure-all. Going along in this vein, their rationale seems to rest heavily on the fact that Big Pharma is not interested in testing the efficacy of LDN because "there's no money in it." You will see all these angles as you search for info about LDN.

Although Naltexone is an FDA approved drug for the treatment of alcoholism, low dose Naltrexone has not been approved for any purpose. However, the medical research that has been done, indicates that there is no harm and few side effects to taking such a low dose (1.0mg to 4.5 mg maximum, once per day). Most doctors do not know anything about it; it sounds "fringe" to them, and it's best to approach them with copies of the research in hand, and ask them to read and consider it. Many won't even discuss it. Some alternative and holistic doctors are willing to prescribe and let you try it. In the USA, there are compounding pharmacies who will dispense it.

Some users buy the whole pills from Mexican pharmacies (it is not illegal to do this---it is not a controlled substance), and make their own low doses by diluting the pill in water and measuring out small doses from that (one 50 mg pill in 50 mL of water). This is not difficult to do, but it takes some daring to go against "the rules" in this way. From my reading, LDN seems the most important to sufferers of MS, because they have likely tried very expensive, strong pharmaceuticals (with harsh side effects) in an effect to control their symptoms, and have been made worse or at least have had no improvement. I would say this group is the strongest proponent for the use of LDN.

Calli

[20/20_Hindsight]

Calli -

Thanks so much for providing this information to me. I will do the research as you stated with Google Scholar.
I hate to leave any stone unturned when it comes to treating my dry eye, which has plagued me since I was diagnosed with an autoimmune disorder many, many years ago. Unfortunately, my Lasik surgeon thought punctal plugs was going to fix everything and declared me a perfect candidate. I did not know about Lasik and dry eye, as I was one of the early Lasik recipients back when there was no link between Lasik and dry eye.

[PotatoCakes]

Thank you for this information. When I googled Naltexone, an anti-drinking / substance abuse drug came up. Is this indeed the same medication that you are taking?

This may be a really stupid question but do you / have you drank wine or had an occasional cocktail while one this?

If it's not too personal, what led you to try LDN to begin with?

I'm fascinated with this and want to talk to my naturopath about it but would like as much information as possible before I do (particularly your experience since you're the closest to anyone I know taking it!). Thank you very much and I'm glad you stopped by the forum again.

[calli66]

Yes, it is the same---Naltrexone.

You should not drink alcohol while on this. I don't drink anyway, so I don't know how they combine or whether it makes you sick or not---you'll have to read up on it. Maybe painintheeye knows.

For me---I wanted to try it to see if it had any effect on my Sjogren's symptoms. I was hoping to bring up my white cell and platelet counts. It didn't help at all for that. But it did help my eyes make more tears.

C

[bp77]

how long it takes to see the result? what happenes when u stop it? do u feel dry again? this is very interesting . Does this work on people with dry eye and no autoimmune conditions? thanks alot.