anyone have success with low dose naltrexone?

Discussion in 'Fibromyalgia Main Forum' started by sabs, Jun 24, 2011.

  1. sabs

    sabs New Member

    my dr is having me try ldn for fibro and some other issues.
    anyone try it yet?
    thanks in advance. sabs
  2. victoria

    victoria New Member

    I have been using it for the past 2 months. I have been feeling better and better, tho not normal by any means. There is a qualitative difference in how I feel that is hard to describe - less aching (felt recently like I was getting attacked in my joints, likely Lyme &/or other infection), and MORE ENERGY. I just moved, and held up way better than I thought I would. I don't think I could've done it 2 months ago.

    The "standard" dose is 4.5 mg, but in researching it, if that doesn't work you may find less is better, as low as 2.5 mg. I also saw one suggestion that ultimately a pt could try it 2X/day 12 hours apart - not sure why that would work? since it is causing one's body to produce endorphins in the early morning hours, and supposedly that is the only time one's body will do that, that way. But apparently it has for some.

    There's more information if you google "low dose naltrexone", including an organization for its use.

    Oh - I also found that the benefits are increasing with time - so give it a few months. How I feel now is better than I did after only one month.

    All the best,
  3. victoria

    victoria New Member

    After talking about it to others, I found out someone I know was taking it and, after giving it some thought, realized that she felt she had less pain but for some reason went off of it. I think she was going to try it again.

    The only side effect that anybody seems to report is insomnia. I had a short bout of insomnia due to it I think, but I persisted, and now I sleep well with no problems. I do take melatonin & tryptophan, before and now, however.
  4. sabs

    sabs New Member

    Your reaction sounds like the explanation the dr gave me. Sounds encouraging, energy will be a real plus for me, too. Looking forward to trying it, it's mail order, but it should be on its way.
  5. mcrankie

    mcrankie New Member

    A friend of mine who has CFS takes an opiate blocker for some addiction; it is suboxone.
    Sub has naltrexone as a main ingredient & he swears by it for energy
  6. victoria

    victoria New Member

    Really? interesting... it is not supposed to work the same way at full dose normally rx'd for opiate blocking (50 mg)... so that's an interesting experience. Wonder how that works because in this case, less is supposed to be more.

    At 50 mg, it is very possible to get side effects, I don't think I'd have tried it at that level. But I'm sure glad that it's helping your friend. Just goes to show we are all individuals in our reactions to things.
  7. spacee

    spacee Member

    Thanks Victoria for trying it. I have heard about it on and off for a few years but never
    heard anyone come back and give their results quite as clearly.

    My appt is a bit off due to the 4th of July weekend and I can only go to the doc on a Monday
    or a Tuesday.

    I have been back on the Transfer Factors, they seemed to help a bit. But I am sleeping soooo
    much now.

  8. sabs

    sabs New Member

    I got the LDN in the mail on Wed this week and started the half dose (work up to 4.5 in a week).
    I do have a cold right now, but at the tail end of it, can't use the CPAP(on it 2 mos now) and have to take cough medicine, so it will be a while, I'm sure before I can tell if there is anything positive to come from this.

    Did you notice any difference with your immune system, jaminhealth?

    Guess I'll see where I am after 3 mos on it...
    Thanks again
  9. kholmes

    kholmes New Member

    Yes, I have severe CFS and have been taking it since December. I've noticed decreased pain and inflammation, greater muscle strength and stamina, the ability to stand for longer periods of time (I'm in a mobility scooter most of the time), and I'm able to bend over and pick things up without feeling like my head is going to explode. Not a miracle cure, but it has made a noticeable difference for me.
  10. sabs

    sabs New Member

    I'm still having sleep issues on LDN, but wondered where there is a site to get more info.
    I have fibromyalgia.
    Thanks, sabs
  11. kholmes

    kholmes New Member

    My sense is that most people with CFIDS deal with some kind of pain issues: inflammation, headaches, neck pain, general achiness, etc.

    I know some whose symptoms overlap with Fibro patients, with much harsher, localized pain in specific areas.

    During my worst periods, I had terrible headaches. But I've never really had the Fibro pain that people describe.

  12. sabs

    sabs New Member

    So far I am experiencing some energy increase. I do have to take a sleeping aid because I am using a CPAP (since mid-April) and have sleep problems anyway.
    Hoping there will be more energy soon. My pain levels are low, so that's a good thing.
    Thanks for the feedback.
  13. ledev68

    ledev68 New Member

    I guess I am unclear. Does this medicine require a doctor's prescription or is it just mail order? I really want to try it but I am on so many other drugs, I just want to make sure there will be no interactions. What if my doc has never heard of it?
  14. sabs

    sabs New Member

    I am prescribed it by my holistic psychiatrist, but I know other Dr's prescibe it.

    I use a compounding pharmacy because it needs to be a pill that is 4.5mg from a drug that normally starts at 50mg. The problem can be that one needs to be off opiates for a time to have it be effectitive. I wasn't on any opiates, so was able to start right away.

    Incidentally, I had a surgery in Nov. 2011 and was prescibed Percoset for the pain afterwards and didn't have any problems from it.

    Does this help?