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Low dose Naltrexone (LDN) and compounding pharmacies

Discussion in 'General Treatment' started by penny, May 14, 2011.

  1. penny

    penny Senior Member

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    I'm a little unclear on the the why of using a compounding pharmacy.

    Is it only for pills of a specific dosage (i.e. low) or is it a quality issue?

    If your doctor gives you a script for the standard 50mg dosage, can you get this through a regular pharmacy and then do the suspend in water trick that many have mentioned to get a low dose?

    Thanks!!
     
  2. floydguy

    floydguy Senior Member

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    I think it's a quality/effectiveness issue. LDN is relatively cheap at a compounding pharmacy. I don't know why you wouldn't just it get there. I get LDN through Skips in Boca Raton, FL.
     
  3. drex13

    drex13 Senior Member

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    Columbus, Ohio
    I bought mine in 50 mg tabs from riverpharmacy.com (Canada) without a prescription. I dilute them in 50 mL of water and take with a dropper.
     
  4. penny

    penny Senior Member

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    Thanks for the feedback guys!

    Convenience. It's much easier to get an rx through my local pharmacy, than mail order. My doctors office sends the scripts electronically, and usually I can pick it up on my way home. It's not just for me, I think my doc would send an rx somewhere non-local, but my stepfather is also interested in trying it out (he has pls/primary lateral sclerosis) and I'm not sure if his doc is as flexible as mine (though he is willing to prescribe). I know he doesn't see him as often.

    So it's purely a practical question. Though having it cost a tenth of the amount wouldn't be a bad thing, quality and convenience are my main concerns.

    I'm assuming it is 'working' for you? I mean, you don't have any reason to doubt it's quality?

    My impression from reading the big LDN thread was that it was a dosage issue.
     
  5. jstefl

    jstefl Senior Member

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    Drex:

    I found river pharmacy at www.riverpharmacy.ca.

    I do the water dilution thing also, but I am using more water to make it easier to do small doses. Using 250 ml of water means that each ml is .2 mg. Since I started at .2 mg, this has worked out pretty well. I have slowly worked my way uo to .6 mg so far.

    John
     
  6. Marg

    Marg Senior Member

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    I get mine from Skip's Pharmacy because he is an avocate and attends a lot of meeting spreading the word. He is also available for questions, if he is not there there answers in 24 hours. This is a great cheap drug with few side eg ffects. I did have a problem with sleep when starting but I do anyway but it seems to be improving. I did not have nightmartes but very vivid nice dreams. As ususal everyone is different.

    I have friends that do the water dilution some get it from India where it all comes from but the shipping is high and actually comes out to be about the same price.

    I started with all 1.5 and worked uo to 4.5. I take 3.0 at night and 1.5 in the morning that way I keep the good mood feeling.

    It will have been 2 years since I started LDN in September and I do not intend to stop. I have read a lot about it and learned that a lot of docs that give it take it themselves for preventative measures and give it to their family and friends.
     
  7. jstefl

    jstefl Senior Member

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    I have looked into Skips Pharmacy, but the website says the you need a perscription. I have talked to my doctor about Naltrexone, and he refused to listen to me or write a script. I explained that I am taking the drug either way and that I would much rather use a drug from the US than India to no avail.

    Where does one go to find an understanding doctor these days?

    John
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi John,

    I did find a doctor who was happy to prescribe it. Since then I have moved to another city and found a nurse-practitioner who is interested in ME/CFS and is willing to prescribe. You might try asking around your community to see if there is a nurse-practitioner who is more open to this sort of treatment. Sometimes they are not so imbued with the rigid mind-set of many M.D.s

    Best wishes,
    Sushi
     
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Try this website http://www.co-cure.org/good-doc.htm there are a few Drs listed on this website. Better yet: http://www.co-cure.org/USA_WI.htm

    Might want to also try this website: http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5420171/k.7A8D/ACAM_Homepage.htm and if the "FInd a Physcian..." link does not work try "contact us" my dr is on both of these websites and he prescribed me LDN.

    You can also call any local compounding pharmacy and ask if they can tell you of Drs who prescribe it.

    GG
     
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I think it is because we use a smaller dosage. I asked my Dr to prescribe it to me in 50mg dosage so I could dilute it, but my Dr said that he couldn't prescribe it that way, but we did work out a system so that it does not cost me $25 copay every month!

    With my other scripts and supplements, it all adds up. PM me if you want to know what my Dr does, because I said I was going to buy it off the internet also.

    GG
     
  11. drex13

    drex13 Senior Member

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    John,Yeah, thats it. .ca, not .com. It's been quite a while since I ordered it. I just recently started taking LDN again. It seems to help with IBS. Right now I am only taking 2.0 mgs. I started at 1.0 mg for a month. I haven't had any negative issues other than some sleep disturbance during the first few nights. I also started taking it in the a.m. to help alleviate sleep disturbances.

    Penny, no I don't have any reason to doubt the quality of Naltrexone I received, but then again I don't have anything else to compare it to. Naltrexone is sold under various brand names, the tablets I have are the brand name NoDict. (I know, nice name.) I think some of the compounding pharmacies actually use pure Naltrexone to make their LDN. Others grind up tablets. You have to be careful of the fillers that are used if you buy from a compounding pharmacy. Calcium fillers are a no-no, as calcium interferes with absorption. Some use Avicell as a filler or acidophillus. I dont have personal experience with these, this is what I have read while researching. check out http://lowdosenaltrexone.orgThere is also an ldn group on yahoo groups.

    John, here is a link to a site http://crystalsmstmldn.org. If you contact Crystal, she can send you a list of doctors in your state who prescribe LDN.
     
  12. jstefl

    jstefl Senior Member

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    GGingues;

    Thanks for the good doctor lists. co-cure doesn't list one within 50 miles of me, but the acamnet site has a couple of docs that I will check out.

    Drex:

    You tolerate LDN better than I do apparently. After having some bad experiences on higher doses, I have resigned myself to starting very slowly and working my up very slowly. I take mine in the morning also. I found that even small doses made my sleep even worse that it was, and that taking it in the morning works best for me. Even with a tiny dose, I feel better when I am taking it.

    John
     
  13. jace

    jace Off the fence

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    You can get a prescription and the Naltrexone, online at Goldpharma. If you buy Antaxone (liquid Naltrexone from Spain) it is a doddle to compound with distilled or boiled, cooled water yourself. All you need is a medicine bottle and a dosing syringe. Make the 50mg, 10 ml bottles up to 50 ml, so a ml = a mg. Dilute more for smaller doses, less for larger doses. Works a treat, and no doc needed. It is an extremely safe therapy.
     
  14. penny

    penny Senior Member

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    Marg:
    The support sounds like a good thing to get, as well as supporting an advocate. Turns out my stepfather already has a script for a low dose that his local pharmacy couldn't fill. I'll give him the info for Skip's!

    Ggingues:
    Thanks, I will PM you. You are absolutely right about all the (even little) scripts and supplements adding up to quite the bill each month.

    Drex13:
    Good to know, maybe I'll go the mail order route too - just to avoid the possible fillers.


    Interesting that so many of you take the LDN in the morning. Since it blocks opiod receptors, do you all notice feeling "icky" (inexacte word I know) when you take it when awake?
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Jace, I use the Antaxone liquid from Spain. I've tried both compounded in capsules and mixing the powder in distilled water and the Antaxone is by far the easiest. I don't dilute it--just use an insulin syringe without the needle and pull up .9 ml which equals my dose of 4.5 mg. Just takes a sec.

    Sushi
     
  16. jstefl

    jstefl Senior Member

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    Penny:

    I tried taking it at night, but had trouble sleeping. I actually seem to feel better after I take it during the day. It doesn't make me feel icky unless I take too much.

    John
     
  17. Hope123

    Hope123 Senior Member

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    I am fortunate to have supportive docs and I would suggest to anyone who is able that you get it through an approved pharmacy for reasons of quality control and advice. This drug is relatively cheap -- as in $35 for 2 months supply including shipping from Skip's. I got it within a week of ordering and I am across the country. I don't know if the "diluting" method works well because I don't know if you get the same amount every time (unless you stir it well maybe?) and then there is also a question of whether/how the drug reacts in water over time. In addition, I asked the pharmacist about drug timing having heard that people take it in the daytime and he advised me not to do that if possible because the surge of endorphins they are trying to work with happens at night.

    The pharmacist also took the time to explain to me the possible theory behind it -- it suppresses endorphins in the short term but your body reacts by making more endoprhins long-term. The ldn org site does advise people not to take LDN if they are taking opioids at the same time; you should be off of it for some period beforehand.
     
  18. penny

    penny Senior Member

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    jstefl:
    Interesting, it seems slightly counterintuitive with how it's "supposed to work" but then it seems like the scientists and doctors don't really know for sure how it actually works. Good to know that folks respond differently - it helps me remember not to take my reaction for granted! I do plan to start very low and go very slow...

    Hope123:
    Yeah, I think I'm convinced that it's worth the little bit of extra effort. I'd hate to go to all the trouble and then have the experiment ruined b/c of a bad compounding agent or poor quality naltrexone. And I think I'm good on opioid - none since an operation two years ago :)
     
  19. JT1024

    JT1024 Senior Member

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    You only have to pay $25?? I have a $45 co-pay each month from the compounding pharmacy I go to. Since we live less that 30 miles apart, I think I need to check out other options! :p
     
  20. jace

    jace Off the fence

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    Thanks, Sushi, I'll have to see if I can get an insulin syringe - it would save some faffing about every ten days. Also, I have been known to spill the stuff :( so that's a great tip.
     

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