sb439(Suzanne) & Wolverine about Naltrexone

Discussion in 'Fibromyalgia Main Forum' started by victoria, Jun 17, 2003.

  1. victoria

    victoria New Member

    From what I've read about Naltrexone, or LDN (low dose naltrexone) is that it should be fast-release, taken at bedtime, and most start at 3 mg or 4.5 mg..... why are you only taking 1 mg, and is it fast release?

    Can you tell any difference yet?

    It's been so hard to find anyone who has tried it....

    I've been talking to my doctor about going on it, I think he's warming up to the subject. Any feedback is greatly appreciated.

    Thanks, Victoria
  2. sb439

    sb439 New Member

    I think it's *not* meant to be fast release, as that interferes with the desired effect in low doses.
    I started with 1mg (expensive!!), since I tend to react badly to most medicines, and am tired of that (and my doctor is understanding).
    However, LDN is meant to have virtually no side effects.
    You could printout the relevant bits from the website and show your doctor. They list pharmacies that compound small doses.
    I can't tell yet whether it's doing me any good, but will let you all know when I do see some difference
    Susanne
  3. tdelong

    tdelong New Member

    I am a pharmacist. I have patients on low dose naltrexone. The immediate release (not sustained release) form must be used. As you know it has to be compounded via a compounding pharmacy. The dose is typically 3 to 4.5mg daily and shoud cost approximately $30. I hope this helps. I you have any questions, please call my office at (913) 498-2121. Troy DeLong, PharmD, RPh, Midwest Compounders Pharmacy.
  4. victoria

    victoria New Member

    Do you know if any of your patients have cfs as a primary complaint and are benefiting from LDN? (Chronic fatigue is my major complaint.)

    If you could get any of them to post here or to me personally, I would love to hear their stories -- and I bet others would too as this is so new.

    Thanks much,
    Victoria
  5. Wolverine

    Wolverine Member

    Thanks for the post vic.

    Suzane - i am extremely sensitive to many many meds, do you get any side effects at all from the LDN? im about to start it next week - oh yes and i forgot to ask the pharmacist to makes sure its the fast release type! >_< Ill ring 2moro. See my post LDN - whos on it?
  6. sb439

    sb439 New Member

    it must not be the fast release, but the normal (slow) release one!!!
    The only side effects I may have got, I believe, are nightmares, which I've had three times since I started, but don't ordinarily get.
    susanne
  7. sb439

    sb439 New Member

    for wolverine
  8. lilwren

    lilwren New Member

    and didn't see any increase in natural killer cells. It probably takes much longer than a few months, but I was taking so much stuff I had no idea what was helping or hurting so I cut back on some things and Naltrexone was one of them. I have CFS with HHV-6 and CMV.

    I got mine from Bigelow Pharmacy in New York (212) 533-2700 - don't remember the exact cost - just remember it was really inexpensive.

    Don't remember any side effects at all.

    It did take a while for my doc (an infectious disease specialist) to even write the Rx - he was really skeptical, but I took him some articles on it and he decided to let me try it. I found the info on Naltrexone at keephope dot net.

    Hope it helps you!

    love,
    Sharon L
  9. Wolverine

    Wolverine Member

    Hi thanks. Ive actually read in all the info ive come across it says it has to be the fast release. Think its in the info on lowdosenaltrexone dot org. Ill go through it again and check but im fairly certain its the fast.

    Chris
  10. Wolverine

    Wolverine Member

    From lowdosenaltrexone dot org -

    IMPORTANT: Make sure to specify that you do NOT want LDN in a slow-release form.
    Reports have been received from patients that their pharmacies have been supplying a slow-release form of naltrexone. Pharmacies should be instructed NOT to provide LDN in an "SR" or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited.

    It appears the 'normal' NT is the fast release form anyway :) Chris
  11. sb439

    sb439 New Member

    apologies, you're absolutely right, it's the normal (and that is the fast/normal release) one. That's the one I'm taking ... Sorry for my mistake, brainfog got the better of me ...
    Susanne