Page 1 of 3 123 LastLast
Results 1 to 10 of 30

Thread: LDN (Low Dose Naltrexon) and Wegener's?

  1. #1
    chrisTIn@'s Avatar
    chrisTIn@ is offline Registered User
    Join Date
    Oct 2010
    Location
    The Netherlands
    Posts
    427

    Default LDN (Low Dose Naltrexon) and Wegener's?

    Has anybody heard from 'Low Dose Naltrexon' as a treatment for auto-immune diseases, and especially for Wegener's?

    I stumbled on it on the internet, and saw that some people's disease activity improved after they started using this medicine, but till now there is little scientific evidence that it works for large(r) groups of Wegener patients.

  2. #2
    drz's Avatar
    drz
    drz is offline Registered User
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    2,827

    Default

    Quote Originally Posted by chrisTIn@ View Post
    Has anybody heard from 'Low Dose Naltrexon' as a treatment for auto-immune diseases, and especially for Wegener's?

    I stumbled on it on the internet, and saw that some people's disease activity improved after they started using this medicine, but till now there is little scientific evidence that it works for large(r) groups of Wegener patients.
    Here is a reference on it:

    Naltrexone Low Dose

    but this reads like a commercial and it is put out by the drug company. It seems strange that if it is half as effective as they claim that it would not be widely used? Why isn't it?

  3. #3
    drz's Avatar
    drz
    drz is offline Registered User
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    2,827

    Default Another commercial for Nfaltrexone? So why haven't we heard about it?

    Wegener's Granulomatosis

    D. is a 62-year-old male. In February 2000, after 3 years of recurrent upper respiratory symptoms and cough, and more recent difficulty with vision, he was admitted to a Boston medical center because of suspected vasculitis. He had lost energy and could not walk more than ten to fifteen steps without having to rest. The autoimmune disease Wegener's granulomatosis was considered probable, due to an elevated sedimentation rate (80) and a positive Anti-Neutrophil Cytoplasmic Antibody [ANCA] level of 65. In May 2000, nasal tissue removed at surgery confirmed "necrotizing vasculitis … highly suggestive of Wegener's granulomatosis." He was treated with corticosteroids for nine months, until January 2001. The ANCA test was 1.9 in July 2000, 12 in January 2001 and back up to 40 in May 2001, at which time he was experiencing marked fatigue and upper respiratory symptoms.
    D. started using low dose naltrexone (4.5mg) nightly in mid-May 2001. After several weeks he noticed a decrease in congestion and a noticeable increase in overall energy. Subsequent tests of ANCA were 16 in August 2001 and the most recent test of ANCA in late December 2001 was down to 1.0. As of September 2002, he continues to report a high energy level—equal to that prior to disease onset—and he is enjoying his noticeable improvement in overall health.

  4. #4
    chrisTIn@'s Avatar
    chrisTIn@ is offline Registered User
    Join Date
    Oct 2010
    Location
    The Netherlands
    Posts
    427

    Default

    Thanks for reacting, drz.
    Yes, if it is half as effective as they claim it would be, why is that?

    Just thought it was interesting. I know a doctor who can prescribe a low dose (3 or 4,5 mg, not 50 mg).
    I'm not taking this, but just was looking for info about this.
    Seems interesting...

    ...blocking opioid receptors, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: beta-endorphin and metenkephalin. Many body tissues have receptors for these endorphins and enkephalins, including virtually every cell of the body's immune system.

  5. #5
    marta's Avatar
    marta is offline Registered User
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    970

    Default

    I just downloaded a book on my new Kindle called "LDN, Google it" after I did a search for books on autoimmune dieseases. I haven't read it yet, but it's funny that you're posting it here. Now I'm totally curious.

  6. #6
    drz's Avatar
    drz
    drz is offline Registered User
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    2,827

    Default

    I did find a mention that it had not been submitted for FDA approval to treat some of these other diseases. Another place mentioned the positives are from anecdotal reports and not hard research results. So why isn't some one doing such research.

  7. #7
    Sangye's Avatar
    Sangye is offline Registered User
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,791

    Default

    I see Dr Seo again in March and added this to my list of questions.

  8. #8
    marta's Avatar
    marta is offline Registered User
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    970

    Default

    Quote Originally Posted by drz View Post
    Another commercial for Nfaltrexone? So why haven't we heard about it?
    So I just finished reading the book I mentioned I bought just days before this thread went up. Very intersting indeed.

    I have had a serious misconseption shattered (I didn't even know that I misunderstood auto-immune diseases like I did) and have learned some interesting things along the way. I will share in a nutshell what I've learned from the book.

    1. I thought auto immune diseases meant that the immune system is overactive. I was in fact wrong. It means that the immune system is deficient and has a hard time distinguishing between self from non self (which I knew) , but it is not over-active like I have assumed all this time.

    2. Although there is no known immune system regulator, research is showing more and more that perhaps the regulator of the immune system is the body's endorphins.

    3. People with auto-immune disorders and other neurological diseases as well as some cancers and HIV/AIDS tend to have 25% or more decrease in endorphins in the blood.

    4. As you can see on the link above from drz, what this drug does at low doses is inhibit endorphin production during the essential hours of the night using a low dose, short term spike which in turn forced the body to create two to three times more endorphins for the following day. The increase in endorphins helps to regulate the immune system into functioning properly.

    5. The drug was FDA aproved for recovering drug addicts at 50mg per day, but due to unpleasant side effects at that dose doctors stopped prescribing it. It has lost it's patent and is now a generic drug, so there is no point in drug companies to do millions dollars worth of research for other diseases as they stand to not make any money from the findings. Nobody markets it and nobody really makes any significant money from it.

    6. Because doctors are afraid of litigation they are hesitant to prescribe 'off label' meds, which would be the case in our situation. But it's perfectly legal and ethical - as we have seen with rituximab.

    7. The drug is very inexpensive ($30 or so a month - quite different from our cocktail) and has literally no side effects. It said that 1 out of 50 patients might experience sleep disturbances the first week, but that inevitably goes away after a week, and besides we're all use to that with pred. It also increases the endorphins, so you're feeling pretty good to boot. There also seems to be no contradictions with our drugs, but I will double check with my doc and the pharmacist.
    It is recommended that people who have had organ transplants and are on immunosupressants as well as people taking any drugs with opiates should not take this (opiate users should stop taking the drugs for two weeks before starting LDN, and organ transplant patients can offset the effects of the immunosurpressants in accepting the new organs - so that might be dangerous)

    8. If you do get a prescription here are a couple of things to ask for.... make sure to ask that they don't prescribe the 'slow release' version, as it is not effective in treating what we need treated. Also because they need to have a filler in the capsules for the low dosages (so a compounding pharmacy will need to put it together), ask that they don't use calcium as a filler as it blocks absorption. The other options are lactose or sucrose as fillers as they don't mess with the absorbtion.

    The book I read is called 'Google LDN!' by Joseph Wouk. Book is so so, but the appendix is great.

    How's that for blah blah blah. I'm going to look into it further in the next couple of weeks. If it can't hurt and can make you feel better and might be able to help with the disease, why not???

    http://www.ldners.org/resources.htm
    http://www.lowdosenaltrexone.org/
    Last edited by marta; 02-09-2011 at 10:53 AM.

  9. #9
    pberggren1's Avatar
    pberggren1 is offline Phil Berggren, dx 2003
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    5,755

    Default

    Very interesting Marta. Thanks for the info. I will try and remember to ask my doc about this next time.

  10. #10
    elephant's Avatar
    elephant is offline Registered User
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,247

    Default

    Exercise releases endorphins, oh so does chocolate!

Page 1 of 3 123 LastLast

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •