low dose naltrexone question

Discussion in 'Fibromyalgia Main Forum' started by simonedb, Jul 1, 2008.

  1. simonedb

    simonedb Member

    After reading mamadove's good experience so far with LDN and doing some more research I felt that trying LDN might be prudent for me too. Went to one of my supportive docs today who came up as a prescriber on net and he is open to me trying it but he didnt know any other way to do it other than a script for the 50mg one and suggested that I just break a crumb off or lick it. I took the prescription in case that might work and if its hard to find someone to do it anoher way around here.
    Does anyone know if this might be worth a try? Any problems with this way? (other than an unprecise dose). I usually have to try most meds that I have used in the past this way until I see how they effect me.
  2. victoria

    victoria New Member

    but that doesn't sound like a very good idea for the reason you stated, extremely imprecise dosage...

    here's what lowdosenaltrexone.org suggests:

    "Low dose naltrexone prescriptions are generally filled at a compounding pharmacy. The druggist uses either generic naltrexone 50mg tablets or bulk naltrexone powder to prepare the LDN capsules.

    "Because there have been occasional reports from patients of a poor quality product coming from scattered pharmacies, we feature the names of several pharmacies on the website that have shown themselves reliable and experienced in correct LDN preparation.

    "(Please note: Under no circumstances should you accept a preparation of "long-acting" or "slow release" naltrexone.)"


  3. MamaDove

    MamaDove New Member


    You have the hardset part 'licked'...Now it's finding the compounder to make it...It is okay that your doc made the script for that, your compounding pharmacist will have to call your doc to be certain he means LDN or low dose naltrexone...

    Victoria was right on by directing you to that site...
    You should call local pharmacies and ask who does compounding...OR to play it safe, contact one of the compounders listed on that site...Dr. Skip's Pharmacy in Florida has one of the best reputations...Google him and get his number...I have emailed him for ldn info and he was wonderful...

    If you haven't read my posts, this is what I did...
    I had my compounder lined up allready and had my new doc scribble LDN on the script...My compounder Kevin then discussed this with me and I taught him more than he allready knew...Most people tend to get the pills made up from the 50mg pills, which is simple for the compounder to do but they contain fillers, such as lactose or acidopholus. From what I remember, the acidopholus was the better of the two...
    I did it completely different to avoid any fillers or preservatives and possible contaminants from producers of Naltrexone...My compounder ordered the PURE POWDER and made it into a liquid, adding only organic pure vanilla extract. It is in a bottle with a syringe...He made it in 1mg/ml, meaning 1 milligram is dispensed per milliliter...I began with 1 mg and am now at 1.5...I can increase or decrease as I like and don't have to mess around with pills...Most make 4.5mg pills because that is considered the therapeutic dose, but then again many are doing 1.5mg pills so they can start at 3 and decrease to 1.5 if the side effects are intolerable, or increase to 4.5 by taking 3 pills if you accept the drug immediately...You will likely continue taking 3 pills per day and if all goes well then you can have the next script made for the 4.5mg pill and take one a day...

    I had trouble the first day I took 3mg...I also suffer from PTSD and this was quite troublesome...I was advised to go down to 1mg and then go up from there...I will be increasing tomorrow to 2.0mg...A reminder~I believe the minimum therapeutic dose is over 2.5 and the constant is 4.5 and the majority it seems tolerate it very well but for those like me things may take time and need tweaking and adjusting...I am glad someone shared my experience and was able to alert me that I could have suffered needlessly and advised me to start low and slow...After waiting so long to begin this, I hated the thought of having to stop it altogether, but I now have it nightly and I am fine doing it MY WAY...

    See if you can locate a compounder and feel comfortable with them, remember this is a drug and the compounding can certainly make a difference...I have trusted my guy for years, he once made my chocolate lab Moose's meds special for him at my request so we have had a long relationship.
    That is important to find someone good, not just 'joe blow' that claims they know what they are doing...

    Take this seriously and look into the site Victoria posted as well as the LDN message boards for what to expect with this drug...

    Let me know if you decided on Skips, I believe you can email of fax the script and he mails it to you...Anticipating your reply...Just talking about LDN tickles my funny bone, it's been the only hope aside from my diet, that I've had since I've been sick...My doc calls me a pioneer for even trying it...I am thankful Dr. Bihari did all the legwork and came up with this wonderful 'cure'. For many, it has saved their lives. I hope to be one of them.

    Good Luck~MamaDove
  4. simonedb

    simonedb Member

    actually I was greatly influenced from reading your experience and thats what got me looking into this.
    shoot I just looked on the script and he just wrote 50mg on there and then "as directed" meaning for me to break it into little pieces, leaving the pharmacist out of that knowledge.
    I guess I need to call him for a dif one, what should he write, like "3.0 mg and LDN"--can I get it compounded into a pill like at skips, I am concerned that if its an injection maybe that would raise a red flag to this doc, it might sound more druggie to him? I dunno, just being cautious, you know how easy it is to get docs or pharamacies thinking you're doing something weird in a bad way.
    shoot getting closer but not there yet.......in meantime the rotation allergy diet is helping.
  5. SnooZQ

    SnooZQ New Member

    Probably compounded is most accurate, however if you read the LDN boards, there are folks who make their own LDN liquid. It is very inexpensive to DIY, though some time committment is involved.

    First boil some water, spring or filtered preferred. Cool to room temp. Next, cut one 50 mg. tablet in half = 25 mg. Crush this half tablet to a fine powder.

    Into a sterile or very clean small bottle with a lid, measure out 25 ml. of the cooled boiled water. Then add in the 25 mg. of crushed naltrexone. Stir or shake well, to dissolve or suspend the particles.

    The resulting liquid should be stored in the refrigerator. Shake it well each time before use.

    Each 1 ml. of liquid will contain approximately 1 mg. of naltrexone. For example, to take a 1 mg. dose of LDN, draw up 1 ml. of the well-shaken liquid into an oral medication syringe. To take a 3 mg dose, draw up 3 ml.

    Helpful equipment: mortar & pestle; oral medication syringe marked in ml increments; larger metric measure for the 25 ml.

    Note, oral medication syringes do not have needles attached, and are commonly found in the pharmacy section of department stores. Also, naltrexone is quite bitter -- if you try the DIY liquid, you may want to add your dose to a glass of juice & glug it down.

    HTH
    [This Message was Edited on 07/01/2008]
  6. simonedb

    simonedb Member

    hey i like it!
    I didn't know there was a scientific way to break it down accurately.
    I don't care about bitter taste, used to it.
    the only med that has really been helpful over the years has been darvon, I used to take darvocet and break the tabs in half until I decided it was ridiculous to expose myself to all that tylenol that I didn't want anyway, so then they gave me the caps without tylenol but I don't always need a whole 60 mg so I open cap and sweep them into 2 gel caps and take prn. works better for pain a smaller dose more often rathr than larger dose less often, but its inexact, perhaps if ldn doesnt work out I will try your method on the darvon too.

    it doesn't seem like LDN would be as likely to send me into awful w/d from the darvon than a larger amount of naltrexone might but I know I should be careful, perhaps try to taper down on darvon first, have been taking a total of about 2 6o mg caps lately, hoping that ldn will help pain and fatigue. I found one blog that said LDN actually enhanced their pain meds but thats not my motivation, I like idea of switching to ldn if possible, less of a stigma, hopefully less of the stupid effect and helps immune system, seems like it doesnt just mask symptoms but actually sort of curative?
    [This Message was Edited on 07/01/2008]
  7. MamaDove

    MamaDove New Member

    First, contact Skips and ask them if the script you have is 'acceptable' for processing...

    Second, what I take is not injectable, but a liquid dispensed by a syringe, I then put it into organic pear juice and DRINK it down...IT IS QUITE BITTER, unlike anything else you have ever had...even with flavoring it gives me the *willies*, but I deal with it...I feel as if it is right for me...

    Third and most importnatly, there is an issue regarding pain meds and LDN and I do not recall the exact 'problems' but please make sure that Darvon will not cause issues...You can also ask Skip about this...

    Lastly, I do not recommend making your own liquid...For the $25-$30 per month, have this done by a professional...I know people do it and they are successful but for me it's a 'why bother'...The quality and expense is aren't a concern to me now and I can rest easy not having to make my own...

    Forgot to add, my doc just scribbled LDN on a script, that was it, my compounder did the rest.

    Give Dr. Skip a call today and ease your mind...

    Let me know how it goes~MamaDove
    [This Message was Edited on 07/02/2008]
  8. SnooZQ

    SnooZQ New Member

    Simone,

    People who try LDN with narcotic class meds usually have increased pain. Here's why. The LDN to some extent prevents the narcotic from doing it's job. And the narcotic prevents the LDN from helping your body increase production of more endorphins. Net result: more pain when both are used together.

    People who take immune suppressants/methotrexate/DMARDs also find little benefit from LDN unless they wean off those meds. Some of the benefit of LDN is by way of the natural endorphins influencing the immune system in generally positive ways, but that doesn't occur when I.S. drugs are taken with LDN.

    I do agree with MamaDove, compounding is usually better than DIY, however, I presented the homemade dilution as a potentially more accurate option than the crumb/licking method.

    Best wishes.
    [This Message was Edited on 07/02/2008]
  9. simonedb

    simonedb Member

    I appreciate both of your suggestions
    [This Message was Edited on 07/02/2008]
  10. simonedb

    simonedb Member

    Hey so I am waiting to get my LDN from skips, should be here soon(went back to doc and had him fax prescrip written correctly directly there)

    I have been putting off going off the darvon though because had a lot to do lately and it works so well for pain and fatigue for me, it usually buys me more time before I succumb to the low oxygen problem. So today is my first day without it Skip told me i need to be 3 days off it before LDN start.Hopefully I will succeed, it has been years since I have been taking it daily so this is radical for me.
    If LDN not as effective will go back to darvon.
    I want to try LDN as it sounds like its proven to be good for immune system and I am not sure if darvon is although I am sure it has helped protect my brain at the least from much pain over the years which is very valuable.
    I want a trial off of it though as sometimes I question whether my memory and iq seem to be going down solely because of cfids or if it could be the meds too,seems like a good time for a break.But I want to treat the pain and fatigue; so LDN might be a substitute i hope that turns out to be improvement.

    anyway, question for y'all-- if the LDN turns out to be a bust for me and my pain and fatigue get bad again and I want to go back to darvon, anyone know how long it takes for ldn to be gone and safe to take an opiate? I can call pharma too, just curious if anyone had experience or knew off top of head.
  11. simonedb

    simonedb Member

    I am starting to have doubts about going off a med I have had good luck with to try the LDN, just because I have started to get one of my scary power headaches that I havent had since last year, also tweaked neck avoiding a squirrel the other day, and need to get some body work today, so bad timing to be going off one thing and having to wait a few days to try the other thing.....with no guarantees, I just don't want to go into a flareup as I was doing relatively well this summer.......you know how symptoms can snowball. but I will try to hang in there a little longer and try all the other tricks i know to prevent it from getting out of hand.
  12. SnooZQ

    SnooZQ New Member

    Simone,

    If you took LDN + Darvon together, the main effect as I understand it, is that the Darvon might not work as well as it would on its own.

    Some folks on LDN have mentioned that, due to an injury, they were rxd pain meds like Darvon ... then couldn't figure out why it was not helping much. Well, the LDN blocks the receptors the Darvon would attach to, so Darvon can't do its job.

    Exactly how long you'd have to be off LDN for the Darvon to be fully effective may vary a bit from person to person.

    The BEST source of accurate answers to LDN questions would be Skip himself -- lots of experience there. You'd do well to verify what I've said (3rd hand, not my personal experience) with a pro like Skip.

    Best wishes.
  13. simonedb

    simonedb Member

    i havent tried it but someone explained how to do it to me in a post about ldn a couple weeks ago
    i think u boil water, 50 cc and dissolve the tablet in there then get a syring thing and measure out 1 or 3mg whatever ya wanna try
    thats teh short version

    i did that actually with 3mg caps but something was giving me killer headache so chillin on it now but still feel its very promising
  14. MamaDove

    MamaDove New Member


    Was it Jam who relayed that her cost would be $137 for 30 50mg pills?

    Here's the math, if I can gather my head around this...

    You only take 3-4.5mg per day and if you use the 50mg. pills to dose then each pill would last up to 16 days...

    16 days per pill multiplied by 30 pills would be 480 days for $137.00...

    Sounds like a bargain to me :) I hope my math is right here :))))))))

    I paid $28.00 per 120ml bottle...I am just now up to 3mg and even if I went to 4mg per day, the bottle would last me 30 days...Months supply for $28.00...

    Does that help anyone in their decision to try LDN? :)

    Does this all seem to have a sarcastic tone to it? I just realized it could be misconstrued (sp?) and wanted to clarify that if my numbers are correct then it's really true what they say about LDN being so inexpensive...

    I am a big fan of LDN, if ya couldn't tell...:)

    I tried to tell someone on another board to pay the $500 phone consult fee to get a script with a doc in NY...For 18 months I exhausted every effort to even just get the script and to be blessed with a compounding pharmacist, whom I knew, just down the road...Seems someone is watching over me

    Hope everyone that wishes to try LDN finds a physician ASAP and hopefully be able to enjoy the feeling of NEW LIFE it has given me...My only regret is that I waited this long...I should have been more forceful, I could have been spared much needless suffering...

    Peace~MamaDove
  15. SnooZQ

    SnooZQ New Member

    In my city, there are only 2 docs who RX LDN, according to our (only) compounding pharmacist. One of those docs would not accept me as a patient, because I was not in-network for him . The 2nd doc does Integrative Med of a sort ... Expensive new patient consult. I didn't realize beforehand that this doc will RX LDN only when his little machine suggests that it is the med for YOU. Since I didn't set the gong off, ... $319 out of pocket & no LDN RX. I was ticked!

    The little machine said I needed folic acid & iodine -- which I aready take. And doc is writing me up for a gene tests & iodine loading test -- neither of which I am about to bite for, another $700 or so worth of tests.

    So I took a big step, ordering from a well-reviewed (on LDN groups) pharmacy in India. My 10 generic naltrexone tabs arrived in 2 weeks. Cost of the med was $16, but the S &H minimum -- $24.95 -- was painful. But for about $42, I've got 50 x 10 = 500 mg. of LDN to use for my personal trial.

    For my first batch of liquid, I used only 1/2 a tab to 25 ml. The main thing I've learned is that the LDN really doesn't seem to dissolve in the water -- it forms a suspension of fine particles, which settle out as it sits. So, SHAKING THE BOTTLE is very important.

    I've been using the LDN for about a week, and so far, much less muscle pain, also less joint pain. Pretty good results considering I started super low -- O.5 mg, because I have a really tricky thyroid and didn't want to start running hyper (which happens to some folks w/autoimmune thyroid when they start on LDN).

    I sure wish I hadn't wasted the big bucks trying to get an RX locally. However those of you with a willing, adventurous & sympathetic doc will be able take the more direct route.

    Best wishes.
    [This Message was Edited on 07/24/2008]
  16. simonedb

    simonedb Member

    that cracks me up about the "little machine" that doc uses to see if you need LDN
    those are the sort of integrative med docs I avoid
    I am open to alterna stuff but keep the muscle testing away from me, I want a lil science in there

    glad to hear its helping some, sorry ya have to mess with such an imperfect system

    I feel slightly hyper in a way from it, maybe its the thyroid
  17. hensue

    hensue New Member

    I get it low dose something! What does it do? What kind of drug is it? How many people take it out there in Fibro land?
    Curious this is a new one
    Hensue