Naltrexone and fibromyalgia

Discussion in 'Fibromyalgia Main Forum' started by ggks, May 11, 2009.

  1. ggks

    ggks New Member

    I have posted this once already and it disapeared.

    Has anyone tried Naltrexone? I found an article in the May 18 issue of National Enquirer page
  2. daylight

    daylight New Member

    To my understand Naltrexone is used in rehabs for detox of opium dependence . I really don't understand why they are giving it for Fm unless it is for detox purposes. It make no since to me.
  3. AuntTammie

    AuntTammie New Member

    In low doses (and they are very low compared to what is used for treating addictions), naltrexone helps to boost the immune system. That is why they think it can help with fibro.
  4. ladybugmandy

    ladybugmandy Member

    LDN has antiviral properties. google dr. bihari in NYC, who treats HIV/AIDS patients with LDN.
  5. monkeykat

    monkeykat Member

    LDN - low dose naltrexone

    Yes, I've been wondering if this is helping anyone either. I discovered it and talked to my doctor about it. The problem for me is that I'm so severely reactive to so many medications that it's a dangerous game of Russian roulette to try something new. In the past, I've been left suffering severely at a severely low level of function getting worse by the week and getting FMS and MCS in addition to my CFIDS as a result of an antiviral I tried and anesthesia. So, meds are a scary option for me.
  6. SnooZQ

    SnooZQ New Member

    I've been using LDN -- about 10 mos. Started at very low dose (0.5 mg) & gradually upped to the recommended 4.5 mg/day.

    My health history is complicated beyond my fibro & includes a significant autoimmune component.
    Before starting the LDN I had made significant strides on chipping away at the gordian knot of my illness, by addressing food intolerance and hormonal imbalance issues.

    Several yrs. ago, at 50 years of age, I would have severe flares that kept me housebound with my walker. Used a cane most of the time. Couldn't do more than maybe 1/2 hr. housework per day, plus dinner prep. Sometimes needed motorized carts to grocery shop.

    I now do moderately-strenuous volunteer work a couple days per week, up to 5 hrs. at a time. I can shop for 7 hrs at a clip & work in my yard for several hrs. at a time. Things are not perfect, but much improved.

    Not all of my improvement is due to the LDN, however the major hours-at-a-time activity IS. I have very little fibro pain at all. My flares are minor & still somewhat predictable (post-bug exposures or REALLY overdoing it). After being on LDN for several months, my DH noticed that he was having a hard time keeping up with me on our walks together. That hadn't happened for about the past 10 yrs ...

    I do encourage those of you who are interested to research LDN. I also am one who is very sensitive to meds, but am thankful that I am able to tolerate the LDN & benefit from it.

    Best wishes.

  7. hensue

    hensue New Member

    I have talked to one doctor in New York and he will prescribe it for me over the phone. I have been following a yahoo group about it and do not know yet?? It was 400.00 for the phone interview and you cannot take things like opium related for pain. I do take darvocet when I get bad so that kinda scared me.

    I am just watching and waiting some people say they are not 100% better. But any percent is better to me.

    I think the stanford study is in phase III I am not sure google ldn stanford fibromyalgia.

    Like I said I am still leary and I am not going to jump on the band wagon yet. Some it has helped a lot and some not at all! the biggest thing I hear is insomnia. Now there is a debate about taking it in the morning and it is usually taken at night.
    You can sign in at they have a lot of MS patients who take it and it helps.
    I would like to know if anyone here has taken it also.
    Just my take on it
  8. gb66

    gb66 Well-Known Member

    I am also very sensitive to meds. I just read several things online about LDN and it sounds very promising to me. How did you go about getting the info to your doctor and getting it in such a low dose form? Thank you for posting this information. GB66
  9. SnooZQ

    SnooZQ New Member

    Unfortunately I was not able to find a doc to RX the LDN. I spent several hundred bucks out of pocket consulting with the 2 local docs that my compounding pharmacy had told me who had RXd LDN in past. But one of those was in the process of changing his practice to a medi-spa; the other used electro dermal screening that said I needed 2 supps I was already taking ...

    My PCP knows I take LDN & thinks I'm doing fine. However, he won't RX for me "because it would be off-label" -- as if off-label prescribing never occurred or was illegal!

    Most docs I've encountered over the years are rarely open to "information" about treatments coming from a patient -- even an educated patient with a science background. Some people have reported docs who are responsive, however IME these are rare practitioners.

    I ended up ordering the naltrexone from India & home compounding it myself into liquid form. There was a thread a while back where I described how I did it. The procedure is also available elsewhere on the web. Not rocket science.

    If you do find a doc who will RX LDN for you, there are several routes you could go. First, if money is no object, just have your LDN compounded up as you go along. Start with a 0.5 mg cap, then ask for a 1.0 mg when you are ready, etc. OR you could get a large lot of 0.5 mg caps & take multiples as you work your way up. OR you could have a 1.0 compounded & start with 1/2 a cap ... you can probably take it from there.

    Best wishes.
  10. gb66

    gb66 Well-Known Member

    Thanks for the info. I am going to ask my new PCP if she's heard of this and what she thinks about it. It's worth a try. If she's not up on it I'll just wait awhile and see if it's approved one day soon. GB66