low dose naltrexone

Discussion in 'Fibromyalgia Main Forum' started by znewby, Mar 19, 2009.

  1. znewby

    znewby Member

    Just read this at the about.com site. Sounds interesting. This is about the Stanford U preliminary study. I called the trial web site contact and she confirmed the results were very positive and would be posted on the American Fibromyalgia website (whichever one that is).

    To: All
    Posted: Mar 19 09 11:36 AM
    Message: 10822.1 (1 of 1)


    Has anyone here tried low dose naltrexone for fibromyalgia? The first controlled study was just completed, with remarkably promising results. Average reduction in pain was 50% with little or no side effects. This was a small trial, but a larger one is now in progress. You will never hear about this drug from the drug companies, nor will it ever be studied by them, because it is not patentable and is dirt cheap. Instead it will require a push from patients to be accepted.

    Naltrexone blocks a particular receptor on microglia and deactivates their pain causing properties. People in the study found improvement in pain, energy, sleep, gastro-intestinal problems, ... Given how safe and cheap this is, people may want to check it out.


    [This Message was Edited on 03/19/2009]
  2. anj211

    anj211 New Member

    I am currently on low dose naltrexone for cfs was put on it in oct doc started me off with 1ml he waited to see how i got on with it in nov he then changed the dose too 2mls but just this month he has put the dose up again to 3mls.In oct before he gave me this i could not get out off bed it has helped but it has been a slow progress you have to give it time to build up it does not work right away.I have to pay 15pounds per month for the medication as it is not on the national health yet.
  3. ladybugmandy

    ladybugmandy Member

    apparently, LDN has antiviral properties. dr. bihari in NYC claims to have kept HIV/AIDS patients alive with it.
  4. SnooZQ

    SnooZQ New Member

    I've been using LDN since July '08, starting at 0.5 mg/day and working slowly up to 4.5 mg/day. There were 2 reasons for starting low:1) This is recommended procedure for people with autoimmune hypothyroid 2) I have had many negative reactions to meds and even supplements in past.

    I have found LDN to be invaluable for energy and pain relief. My sleep has improved. My problems are fibro, arthritis, and an undifferentiated mixed-type autoimmune disease syndrome. Recent years past I have frequently needed to use a walker or cane for getting around -- when I was ABLE to leave my home.

    Today I am much more active than I've been in a long, long time. I do a moderately active type of volunteer work twice per week -- for up to 6 hrs. at a time. I've gone shopping for up to 7 hrs. at a time. Of course I'm zonked at the end of those days, but just that fact that I am able to do this -- heck, that I'm able to consider it -- is something of a minor miracle.

    I still have flares in predictable circumstances, however they are shorter in duration and less intense. I feel very thankful that this medication has reduced my pain by about 80%.

    While LDN (I home-compound from 50 mg. tablets) is very inexpensive, it can be difficult and expensive to find a prescribing physician. I spent several hundred dollars out of pocket on new patient visits with doctors.

    Another issue that newbies w/fibro may have is that there are a number of meds that render LDN ineffective: particularly opiate-based pain killers, as well as immune system modifiers.

    Best wishes to all.
  5. znewby

    znewby Member

    is whether it could interact with anti-depressants or hormones a person could be on. For example, whether a person on armour thyroid or prozac might need less after a few months on LDN. It sounds as though it doesn't have an impact on current meds from what I can see.
  6. SnooZQ

    SnooZQ New Member

    I home-compound generic Naltrexone 50 mg. tabs into the daily dose of LDN I need, by making a suspension in water. The tablet must first be finely ground; I use a mortar & pestle.

    One 50 mg. tablet in 50 ml. water = 50/50 = 1 mg. naltrexone per ml. of solution. Right now I take 4.5 ml. liquid home compounded LDN, = (roughly) 4.5 mg. LDN. Note, home compounding is not as accurate as professionally compounded. However it's good enough to do the job for me.

    Of course you must maintain a very clean field & use relatively sterile supplies while doing home-compounding. Since water is not a good solvent for naltrexone, many fine particles settle out each day, so the liquid must be shaken well before the dose is measured. And you do need to refrigerate home-compounded LDN. It's a hassle for travel, to use LDN this way.

    Done this way, 30 tabs of regular Naltrexone supply about 10 mos. worth of LDN at 4.5 mg./day. And this is not an expensive med. But most docs & pharmacists would cringe at the thought of patients doing home-compounding. However, it's not rocket science.

    Hope I've explained things better. Best wishes.
  7. simonedb

    simonedb Member

    that method was rec'd to me as an option back when i was getting into it. i think they talk about it at their websites etc I didnt end up needing to do that as i found a doc willing to prescribe ldn vs regular naltrexone. its much easier to control the dose if you could just get a doc to prescribe the ldn liquid, there is a pharmacy in illinois that is reputable listed at ldn websites that is all into health and it was only like 30bux for a months supply but since i took such a little amount it lasted me like 3 months. cheap.
  8. simonedb

    simonedb Member

    hey i would just do what i think people like you and i usually do---listen to yr body and see how yr feelin and if its workin where yer at stay there, if not move up dose, or down, what yr intuition or dousing tells ya. so much is a personal experiment right.
    if yr sensitive like me .5 a couple times a week might do ya, it seems to me one of those things where less is more. 50mg to me makes it into an awful drug (from what i hve read).
  9. SnooZQ

    SnooZQ New Member

    How much is 0.5 mg: **Once the LDN is mixed with the water, the measurements become ml, (aka milliliters). So, I started with 0.5 ml of liquid (= 0.5 mg LDN -- the dry portion suspended in the liquid).

    To do ml measurements, most of us need a tool. I used a children's liquid med tube calibrated into milliliters. The one I use holds 10 ml. total liquid, and has a little plastic spoon at the top end (to help you get a med --say an antibiotic liquid -- into the kid). I got mine I think at Walgreens -- certainly at one of the drug or dept. stores. There is wonderful lab equipment that would do the job, if one has access. But baby-med measuring equipment is fairly readily available. You may also find a ml measurer in with the kitchen measuring cups & measuring spoons -- but for this purpose you need a measuring tool for small amts.

    How much is 0.5 ml: ** One standard teaspoon is 5 ml. So, 0.5 ml would be 1/10th of a tsp. I guess you could go with "a little less than 1/8 tsp" -- but I am more comfortable with the more accurate measuring device.

    What kind of water I used: ** I used filtered, reverse osmosis water, and I boiled & cooled it before measuring & mixing. Just an extra precaution, I'm a worry wart. Wouldn't feel comfortable using plain old tap water for a med that would be sitting around in my frig a week and a half.

    How long I stayed at 0.5 mg: ** About 2 weeks. -- and for each step, between 10 days and 2 weeks. The steps I used were: 0.5, 1.0, 1.5, 2.0, 2.5, 3.0, 3.5, 4.0, 4.5.

    I am very med-sensitive; in fact most of those "no side effect" meds & supps you (Jam) listed on a recent thread are problematic for me. When I first started, and each time I increased, I would have mild spells of wooziness in the mornings. Not enough that I couldn't drive or function, but enough that I could feel it. Once I was at a given dose & hadn't had the a.m. weirdness for several days, I moved on.

    Some people do just start out BANG on 4.5 mg/day and have no trouble with it other than perhaps wild & crazy dreams at first. But for sensitive folk, and those with thyroid trouble, the slower method is perhaps better.

    If I had succeeded in getting a doc to RX for professionally compounded LDN, I would have asked for the first script to be at the 1 mg dose, in capsules. These are easily broken down (at home) into 0.5 mg -- you need extra empty capsules on hand. From there, I would have used multiples and/or halves as needed as I worked my way up. For example, if I needed a 2.5 mg dose, I'd take 2 (1 mg) capsules plus a half capsule. Then, once I got to up to my goal of 4.5 mg., I'd phone the doc & ask for an RX at the full 4.5 mg., all in one cap.

    Does that make sense?
    [This Message was Edited on 03/22/2009]
  10. SnooZQ

    SnooZQ New Member

    You are welcome. Good luck, I hope one of your docs will let you have a try with LDN. My stiffness & flexibility is so much improved on it ... hope it would do the same for others.
  11. thecatswhiskers

    thecatswhiskers New Member


    I'm going to be starting LDN and doing the same method of home compounding as you (as prescribed by a Dr here in the UK); how long does it keep in the fridge after you've compounded by dissolving the tablet in water? I'm going to be starting off at the tiny .5 ml dose, and wonder how long the 50ml (50g) suspension will stay fresh and viable for?

    Thank you in advance! :eek:)
    [This Message was Edited on 03/28/2009]
  12. SnooZQ

    SnooZQ New Member

    Formulation and stability of naltrexone oral liquid
    JP Fawcett, NC Morgan, and DJ Woods

    OBJECTIVE: To assess the stability of naltrexone oral liquid prepared from tablets and powder

    DESIGN: Naltrexone 1 mg/mL oral liquids were prepared from tablets and powder and stored in the dark at 4, 25, and 70 degrees C.

    SETTING: A university pharmacy school and affiliated urban teaching hospital.

    CONCLUSIONS: Naltrexone 1 mg/mL oral liquids prepared from tablets or powder are stable when stored in the dark for 60 days at 4 degrees C and for 30 days at 25 degrees C.

    The Annals of Pharmacotherapy: Vol. 31, No. 11, pp. 1291-1295.


    Unfortunately this abstract does not say whether there was preservative of some sort in the liquid. I assume the liquid was "more" than water, as naltrexone doesn't totally dissolve in homemade water preparations. Compounding pharmacies use some sort of additional solvent or suspension agent for their liquid LDN products.

    For home compounding, you crush the tab to fine particles, which are suspended in plain pure water. Therefore you must shake your LDN liquid well each time before use, as the LDN particles settle out after standing.

    From personal experience and that of others, there is no problem leaving the homemade LDN water in the fridge for 2 weeks. Make sure you use boiled, cooled pure water (distilled or filtered first if possible).

    Make sure all of your measuring equipment is ultra-clean and that you work on an extremely clean surface. Ultra clean work field also for mortar & pestle, as well as for knife & cutting board if you will divide a tab before making the liquid. Lay your equipment out on clean paper towelling, if you do not wish to bleach off your work surface.

    At 4.0 - 4.5 mg/day doses, a 50 mg tab lasts 11 - 12 days, so does not need to be split. But for starting doses, you must either divide tabs in halves or quarters, OR be willing to toss liquid after 2 weeks.

    So, with the 0.5 mg starter dose, if you are not willing to "waste" much LDN, you need a quarter tab = 12.5 mg of a 50 mg. naltrexone tab. Use 12.5 ml water. Here in the USA, our standard kitchen measure teaspoons are 5 ml. : so 12.5 ml water would be 2.5 teaspoons.

    One further suggestion: boil a little more water than you need; measure when cool. If you measure before you boil, you may lose some along the way.

    Note that, at 0.5 mg/day naltrexone, your batch from a quarter tab would last 25 days. It may be that you decide after a week that you want to bump up to 1.0 mg. OR, you may wish to stay at the lower dose & chance it that your LDN is OK to take. OR, you may stay at the lower dose & make a fresh batch after 2 weeks. I don't think that the LDN will turn poisonous or toxic as it sits in the fridge, it's just that potency may or may not be as good as fresh. The pharma abstract suggests it likely would be OK.

    I'm happy to answer any other questions. Please let us know how you do on LDN: good, bad or indifferent.

    Best wishes.
  13. thecatswhiskers

    thecatswhiskers New Member

    That's absolutely fantastic, and just what I wanted to know, so thank you very much, I'm really grateful. Yep, I'll be starting off on the 0.5ml and s-l-o-w-l-y working up so I will split the tablet to make my starting suspensions.

    Will certainly let you know how I go! :eek:)

    Take care
  14. znewby

    znewby Member

    Below is a comment from Stanford U.
    I've been told our article will be published in 'Pain Medicine' this May. The paper may be released sooner on the internet. The title will be, " Fibromyalgia symptoms are reduced by low-dose naltrexone: A pilot study". The paper will be followed up later by an article in Fibromyalgia AWARE. Unfortunately, I can't give out the manuscript now because of copyright issues...

  15. Debra49659

    Debra49659 New Member

    Thanks for the information. Is it available only by prescription?

  16. hensue

    hensue New Member

    I have not tried it yet but the more I read on internet it is there
  17. znewby

    znewby Member

    Stanford says if you can read the Pain Medicine article when it comes out (it is not out yet) then it will explain all the details without any media interpretation. The reason they cannot yell out that it is recommended is that in their field they have to reproduce the same results twice in a trial.
    [This Message was Edited on 04/21/2009]
  18. thecatswhiskers

    thecatswhiskers New Member


    I've just started the home-compounded LDN 4 days ago (4 doses in). I've started at 0.5mg (0.5ml) and used the same method of compounding as mentioned here in previous posts.

    I'm having side effects seemingly (nausea, lack of appetite, tiredness, painful glands, dizziness, depression/ anxiety), alot of which seem to be mentioned when you look up the side effects of naltrexone.

    Is it possible do you think to have side effects at such a miniscule starting dose? If so, should I hang in there (will they diminish?). Has anyone else experienced this at the start of LDN treatment?

    Many thanks in advance for your help! :eek:)
  19. equanimous

    equanimous New Member

    I experienced depression and increased fatigue the first couple of days after I increased from 1.5 mg to 3.0 mg of LDN. The depression went away, but the fatigue did not, so I went back down to 1.5 mg and have stayed at that dose since. Definitely give it a little while, because there's a good chance that the initial side effects will dissipate.
  20. SnooZQ

    SnooZQ New Member

    I started LDN last July at 0.5 mg dose & experienced a little wooziness & nausea. These were not continuous, but esp. in the a.m. I would have "spells" of mild symptoms. Usually within a week to 10 days the spells would disappear.

    Each time I increased my LDN (by O.5 mg) I would have a repeat experience.

    FWIW, there are some people who believe that LDN side effects are increased with gluten & dairy in the diet. Sugar also can increase side effects in some people. I am GFDF, but have noticed that if I overdo sugar, I really "feel it" much more so than before LDN. Taking a good quality probiotic does make me a little less sensitive to sugar side effects, but I've found less sugar is really better. And I am not at all a sugarholic.

    Apparently gut yeast/SIBO issues will give herx reactions when LDN is on board. The endogenous opiates that our bodies produce when we are on LDN have a complex interaction with the immmune system.

    Best wishes.