Home Forums General Discussion LDN – Naltrexone

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  • #303125
    klogan
    Participant

    I read the LDN involving posts, but am not seeing a lot of activity on this board about LDN.

    Maz, I am especially interested in hearing your opinion, should you have one.

    I'm doing okay on 50mg doxy MWF and a bunch of supplements, but I'm  not cured yet! Getting a ton of new mad crazed itching (numular excema etc). Little worse overall this year than last.

    My diet is not great, trying to cut out wheat on general princilples.

    Here's a Web site: http://www.lowdosenaltrexone.org/

    Interested in any thinking on this with many thanks,

    kml

    #337518
    Eva Holloway
    Participant

    hi,

    this is Eva, I have been on LDN for three months now and can say that it works. I have a picturen of me in August when I walked very bend over and now were I am almost upright. Still a long way from the straight upright but it's better. I take 4.5 mg every evening before I go to bed, I sleep better and have more energy. I even started to put up Christmas decoration, which I would not been able to do last year. My doctor was very willing to give it to me and I read an article from a chiropracter who stated that he takes it for MS and he said the amount that is given is like a holistic medication because of the low dosage.

    I had some sleepingn issues on the beginning but they have gone away. Most nights I sleep from 11 pm till 7 am all the way through. before it was like two hours the most, I would get up, stay awake for an hour or so and then go back to bed. Many days I had to take naps in the afternoon. That happens now seldom unless I overdo it during the day. What is required that you get into a deep sleep. REM to rebuild your endorphins. Even my hands are looking better, I have Dermatomyositis with severe muscle weakness and I wish now:headbang: I had asked my doctor in March on June when I first heard about LDN, I would be way better than now.

    Hope this helps some.

    Eva:D

    Eva Holloway

    #337519
    vinny
    Participant

    I monitor 3 LDN websites and there is not a lot of evidence that it is a stand alone treatment for RA or a pain reliever. I had been on Minocycline and Diclfoenac for 8 months before I started LDN. I think it is helpful to have pain and inflammation under control before starting LDN, which is meant to modulate the immune system to help fight the disease. I take 4.5mg of Naltrexone at bedtime every night and believe it has helped me reduce my Minocycline level and stop Diclofenac completely.

    vinny

    Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

    #337520
    klogan
    Participant

    I think it is helpful to have pain and inflammation under control before starting LDN, which is meant to modulate the immune system to help fight the disease.

    I don't have a lot of pain at this point – feet, hands, and back hurt a bit at this point. MY rheumy is not too enthusiastic, he says he uses it for a few connective tissue diseases. I think he said (didn't talk to him myself) that he prescribes 40mg – seems unlikely.

    Well, I can ask him about it next time I see him. Hard to know when to try something new. I find I'm a bit of a sucker when it comes to new miraculous drug ideas. Now I'm pretty conservative.

    Thanks for your answer!

    #337521
    Eva Holloway
    Participant

    kml,

    one thing is that the medication the doctor gave you needs to be compounded or put in a bottle of liquid and taken by small amounts every evening. You can not take the 40 mg all at one time, it doesn't work that way. Do you have a compounding pharmacy close by where you live? then take it there and have it compounded into 4.5 mg of capsules. Please check with the pharmacy before you do anything else, this is very important.

    As stated LDN needs to be taken with other medication. I have RA and DM and still muscle weakness, but the LDN is making a difference.

    Eva:D

    Eva Holloway

    #337522
    Maz
    Keymaster

    [user=87]klogan[/user] wrote:

    I read the LDN involving posts, but am not seeing a lot of activity on this board about LDN.

    Maz, I am especially interested in hearing your opinion, should you have one.

    Hi kml,

    I've done some research on LDN and, in my personal opinion, think it would make a safe, supportive adjunct to AP. I'm considering trying it out, myself, but I think the people who are using it – Eva and Vinny – are probably the best spokespeople for LDN as they've had good success with it already.

    If you type in LDN or Low Dose Naltrexone in the search box above, you'll find some previous threads discussing LDN. Some folk have not had much success and some have measurable success. What seems to be attractive about LDN is that it stimulates endorphin production, which are the body's natural pain-relievers, but also a means to modulate immune function – this was my inference from reading the material on LDN, but as Vinny says, there aren't any studies on this so it's purely an assumption on my part.

    There are said to be no side-effects, apart from possible restless sleep and vivid dreaming in the first week or so, and the only cautions are that it isn't to be taken with certain medications. I'd have to re-check those drug interactions, but if memory serves they are mainly drugs in the “morphine” family, like codeine, for instance.

    The doses used are minute – 3mg to 4.5mg per day, which is about a tenth of the dose given to drug addicts to prevent cravings, so thought to be pretty benign…in other words, can't hurt much and could well help. Additionally, it is a relatively inexpensive drug.

    I also understand that, like AP, some people respond more quickly than others. In some cases, it can be months before any signs of it working show up. There are some good YouTubes you can watch on LDN, too, if you have time to search them out and listen.

    Sorry I can't be of much more help, kml, but as mentioned, the folk who are using it here are the best ones to tell you how they're doing and whether it's worth trying it as an adjunct to your AP. This is all pretty much heresay on my part, as I've just read the material and sharing what I've learned at this point.

    Really nice to hear you're doing so well on your AP and so cute to see your funny face avatar again! 😀

    Peace, Maz

    PS I think my only questions about LDN would be that I'd like to see longterm studies on its use, basically because it's a bit of an unknown regarding what happens when someone comes off LDN after being on it for a long period of time. For instance, does the body learn to depend on it for endorphin stimulation? What about herxing? If the immune system is functioning at a more optimal level, would this incur more or less herxing? I read one post recently (sorry it's late and can't remember who) where after starting LDN they worsened significantly…both initially and when re-challenging with a second trial. This could be seen as a good thing, but not necessarily if the herxing is intolerable and one needs to function. In my research, I noted that there does seem to be significant differences in AI diagnoses and the use of LDN as regards to responses/herxing…so my guess is that it's possible that someone with MS may respond better than someone with RA, for instance.

    #337523
    jtubman
    Participant

    Hi Maz and everyone,

    Well I guess we are the first couple to both be on LDN. I have been on it for approx.4 months to treat Vitiligo, and I have stopped losing my skin pigment ,at 3 mg per day. No side effects for me, and a little more energy. I would rate LDN as the most cost effective drug in the world.

    My wife Kathryn, has taken LDN since FEB2009, for Dermatomyositis. She started at 1.5 mg per night, and is now up to 4.5 mg(Max.) per night, going up gradually over an 8 month period. She felt improvements almost immediately,and continues to improve with increased energy.

    LDN and Minocin have both been lifesavers for her. She has gone from being confined to a hospital bed 13 months ago(for approx. 9 months), to being able to walk for up to two hours at a time now. No more pain, no more heart & lung involvement, and no more cancer. She also takes alpha lipoic acid to build muscle. Physio and massage have also sped up the healing

    She has survived breast cancer and DM. She is living proof that this treatment works. A dramatic improvement to say the least.

    Jim  & Kathryn

     

     

     

     

     

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