Home Forums General Discussion LDN Safe?

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  • #456948
    Calida
    Participant

    Thanks, Lynnie!

    Yes, I realized that there were two things at play in my replies about LDN so that’s why I wanted to clarify the paradox of homeopathic doses as compared to full strength naltrexone.

    I initially used the words “increase”, “decrease” and “minuscule” in terms of the numeric values of the doses. Reading others’ posts made me realize that those who don’t understand the paradox effect would misunderstand the numerical relationship of the dose as it relates to the actual strength of LDN. “Less is more”, the quote from my doctor, means that a lower dose of LDN is actually stronger than a higher dose of LDN. That is quite different from full-strength naltrexone in which a higher dose is stronger, which is the case in traditional medicine.

    It was a difficult concept for me to understand and embrace when I first explored homeopathic medicine years ago. How could watering-down a substance make it stronger in an effective medicinal way? But that’s how homeopathic medicine works. New users of LDN may not understand that if their doctor doesn’t explain it or if either doesn’t have some knowledge of homeopathic medicine.

    So, to clarify; Lower doses of LDN are “stronger” (more effective) than higher doses of LDN. The range prescribed, as established by Dr. Bihari, is 3mg – 4.5mg in autoimmune diseases. It’s possible that any dose outside that range does not follow the paradox rule but there just isn’t enough data to establish that one way or another. However, homeopathic medicine is based on “less is more” so I would err on the side of the traditional homeopathic school of thought.

    The ability to adjust those doses through different methods has allowed some to play with their dose until they find what’s known in LDN groups as “the sweet spot”. I don’t recommend that at all and feel one should find a physician with LDN experience. Unfortunately, many are not that lucky as docs with LDN experience are few and far between.

    I noticed that worldofme was “increasing” his dose believing he was progressing towards a stronger dose when, in reality, it just doesn’t work that way. It also depends on the individual, state of the immune function, and level of inflammation. That’s why why I believe if a doctor prescribes 3mg of LDN, then one should start with the dose prescribed. If there are unwanted effects from that dose, ask the doctor if it makes sense to prescribe a slightly lower or higher dose and work from there.

    I just confused myself by going on too long! Hope it’s clear to others.

    Best always,

    Kelly

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #456949
    Linda L
    Participant

    Do you know if the dose depends on the weight of the patient? I don’t think we have any doctors here who are experienced in LDN. I have asked many and none has heard about it as a low dose treatment.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #456950
    Calida
    Participant

    I don’t know, Linda, but I do know that some docs do factor a patient’s weight into the equation when choosing the dose to prescribe. Then again, that is how doctors are trained to formulate a dose of most meds for an individual so the weight factor may be more habit and established protocol than a useful tool when prescribing LDN.

    I know one doc who felt my husband’s dose should be higher than mine due to the big difference in our weight but it didn’t work out that way, it works the opposite way in our cases. It seems LDN is safe enough to experiment a little, under doctor’s supervision, to find that “sweet spot” as weight, alone, doesn’t seem to correlate to the effectiveness of a particular dose. It also seems to vary within the same disease based on other factors and one may be age. One day we’ll have better data but, until then, we’re kind of lab rats! 😉

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #456957
    PhilC
    Participant

    Hi Kelly,

    At full strength, naltrexone’s effects increase as the dose increases. In homeopathic doses, naltrexone’s effects reverse and “less is more”. In other words, the effects become STRONGER as the dose is LOWERED.

    Although I understand the use of homeopathy as an analogy to help a physician explain how LDN works, LDN is not a homeopathic medicine. As such, the “rules” of homeopathy do not apply.

    If patients start fooling around with doses and, in their ignorance, lower their dose believing less medicine is safer, they may have an exacerbation of disease symptoms. Going from .5 and slowly increasing the dose over time is actually DECREASING the potency of naltrexone.

    That would only be true for someone who is hypersensitive to naltrexone, and whose maximum tolerable dose is at or near 0.5 mg. In such cases, starting at a low dose and slowly working one’s way up to the “normal” dose of 3.0 to 4.0 mg is the smart thing to do. Consider what could happen if such a hypersensitive person started at 3.0 or 4.0 mg. If the patient sees no benefit or (worse) experiences a flare, he or she might decide to abandon the treatment, thinking it is ineffective. Just off the top of my head, I can think of at least two people who never took any other dose of naltrexone except 4.5 mg, and who eventually decided to abandon the treatment because it was either detrimental or ineffective. Had those people started at a much lower dose, the outcome might have been different. We’ve seen the same kind of thing happen when a physician prescribes 100 mg b.i.d. minocycline as the starting dose for an RA patient. Fortunately, we’ve been able to “rescue” some of those people by helping them understand what is happening to them (a Herxheimer reaction). Unfortunately, some people never seek help, and end up abandoning what might have been a very helpful therapy.

    This is why I always recommend following doctor’s orders. If your doctor prescribes 3 mg of LDN, please don’t start messing around with the dose believing you know better than an experienced physician unless you are one yourself.

    In my (informed) opinion, a physician who would prescribe 3.0 mg of naltrexone to an AS (or PsA, RA, etc.) patient with active disease does not know what he or she is doing (with respect to LDN), or does know and is being reckless. The reasons are simple, and do not require a medical degree to understand. We know that LDN makes some people worse (causes a flare or relapse), and we also know that people’s sensitivity to naltrexone varies. If an incorrect dose of LDN were merely ineffective, it would not matter nearly as much. But because LDN has the potential to harm rather than help, a cautious approach is warranted.

    My husband’s Graves symptoms resurfaced after he was prescribed 4 mg of LDN. After consulting with our doctor, we INCREASED the dose to 2 mg and my husband has been in complete remission since that time, 2.5 years ago.

    That is a good example of why a “cookie cutter“ approach to prescribing LDN is a bad idea. Your husband is most likely extra sensitive to the effects of naltrexone. Perhaps his body has trouble metabolizing and/or excreting it. And because of that, a “normal” dose of LDN is too much for him.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #456959
    Calida
    Participant

    Hi Phil,

    As a licensed medical professional (retired), I spent about 12 years teaching CMEs and professional (medical) ethics. The first rule in medicine is “do no harm”. Beyond that, there are laws governing the practice of medicine that keep patients safe.

    One is basic “negligence” and that is failing to do what I’m licensed and trained to do. The second is “gross negligence” which is practicing medicine beyond my education/licensing. Neither comes into play in this forum as no one here is my patient and I’m not giving medical advice but these laws still influence the degree of support I’ll give in any forum as a lay person. I share peer-reviewed research done by medical professionals and educate non-medical people in basic A&P, disease pathology and some pharmacology within the boundaries of my education and experience which totals about 30 years. I NEVER undermine or contradict the patient’s doctor’s advice or attempt to persuade a fellow patient to disobey his/her doctor’s orders. That would be unethical on my part and quite dangerous for my fellow patient if (s)he was foolish enough to accept my LDN advice over that of an experienced physician.

    The paradoxical effect in medicine is well known and one can compare naltrexone to morphine in terms of opposite effects at either end of the dosage spectrum. Naltrexone hydrochloride, at full dose, causes the complete receptor blockade by knocking exogenous opioids (heroin, morphine) out of these receptors and acting as a placeholder in the receptor, preventing the high addicts seek. This also decreases the normal production of endorphins as the body is tricked into believing there is more than enough. Once the naltrexone leaves the body, the empty receptors signal the body to produce more endorphins. However, naltrexone, in its original full dose formulation, was meant to be taken daily thereby sustaining the blockade and preventing the production of natural opioids (endorphins). This is why naltrexone was found to be lacking as a remedy for opiate and alcohol addiction.

    There is not enough empirical evidence supporting specific applications of LDN in various diseases to establish hard and fast protocols. Even Dr. Bihari’s guidelines are based on anecdotal evidence but the generally accepted protocol in autoimmune disease is 3 – 4.5mg of LDN and research seems to support that range at this time.

    However, the “less is more” rule in homeopathy still applies but, according to my doctor, the dosage is subjective and based on the patient’s condition as well as the doctor’s experience. As I mentioned, degree of immune dysfunction and inflammation may be a part of the equation but the rules of traditional medicine that state “more is more/stronger/more effective” in treating disease CANNOT be applied to homeopathic doses.

    ULTRA Low Dose Naltrexone (doses around .5, 1 and 1.5mg) has a different mechanism of action than the typical LDN doses of 3-4.5mg. While the latter doses most of us use prevents the concomitant use of an exogenous opiate (oxycodone, Vicodan etc), ULTRA low dose naltrexone actually potentiates the analgesic effects of oxycodone, making smaller doses of exogenous opiates (NOT homeopathic doses) more effective.

    Adding ultra low dose naltrexone to oxycodone enhances and prolongs analgesia: a randomized, controlled trial of Oxytrex.
    https://www.ncbi.nlm.nih.gov/pubmed/15943961

    Therefore using LDN in lower doses than those that fall within the effective dose range for autoimmune disease (3-4.5) established by Dr. Bihari and supported by subsequent data (Dr. Jill Smith’s Crohn’s research et al) is potentially DANGEROUS if not prescribed by a treating physician as it involves a DIFFERENT mechanism of action than LDN.

    It’s my educated opinion as a medical professional that if one decides to reject an experienced doctor’s prescribed dose of 3mg and, instead, chooses to dilute the drug to create a potency outside the established range, they are playing with fire.

    Phil, below you say you have an “informed” opinion. Informed by what? If you are a licensed, practicing physician and treat your autoimmune patients with LDN, please make that clear so that those who read your words understand that your dismissal of a physician’s professional medical opinion is based on medical expertise that goes beyond the education of most of us here and our LDN prescribing doctors. To call a physician “reckless” and imply you know more about LDN’s effect on the human body than, for instance, worldofme’s MD – who prescribed our fellow patient 3mg of LDN with the knowledge that he has AS – requires more credentials than the word “informed”.

    With regard to my husband, your opinion is, again, incorrect. You said “Your husband is most likely extra sensitive to the effects of naltrexone. Perhaps his body has trouble metabolizing and/or excreting it. And because of that, a “normal” dose of LDN is too much for him.”

    My husband is not extra sensitive to the effects of naltrexone. All anecdotal evidence (there is no research data) indicates that the LDN dosage is different for thyroid disease patients due to the interaction of LDN and thyroid medication, not because the patient’s body is sensitive to LDN.

    By the way, the MD who prescribed our LDN is a listed Roadback physician who has been practicing medicine for almost 50 years and has many years of experience prescribing LDN to rheumatic patients.

    Hi Kelly,

    In my (informed) opinion, a physician who would prescribe 3.0 mg of naltrexone to an AS (or PsA, RA, etc.) patient with active disease does not know what he or she is doing (with respect to LDN), or does know and is being reckless. The reasons are simple, and do not require a medical degree to understand. We know that LDN makes some people worse (causes a flare or relapse), and we also know that people’s sensitivity to naltrexone varies. If an incorrect dose of LDN were merely ineffective, it would not matter nearly as much. But because LDN has the potential to harm rather than help, a cautious approach is warranted.

    That is a good example of why a “cookie cutter“ approach to prescribing LDN is a bad idea. Your husband is most likely extra sensitive to the effects of naltrexone. Perhaps his body has trouble metabolizing and/or excreting it. And because of that, a “normal” dose of LDN is too much for him.

    Phil

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #456960
    vinny
    Participant

    Richie,
    I’m not sure what you are trying to imply when you state that something is “smelly” with this thread. Richie, do you or have you used LDN? If not I don’t know why you are even commenting. I have used it for years and one of the common ways to administer it, is to buy 50mg prescription Naltrexone tablets and dissolve 1 50mg pill in 50ml of distilled water so that 1ml equals 1mg. That is the way my primary care internist writes up the script. It is much cheaper that way and makes it very easy to adjust doses that way based on your research. I am a retired chemist so I have the time to do my own research. I hate to see someone trying to discredit a very good thread.
    vinny

    Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

    #456961
    richie
    Participant

    Hi I think my message went way over your head –I* am in no way referring to LDN nor am I knocking it –if you would have read my post carefully –what I felt was “smelly ” was a particular persons dialogue –I doubted very strongly the veracit
    y of this persons postings —Sorry you got the wrong message —Unfortunately after being around here for about 20 years or so -When something looks smelly or doesnt seem right I mention it —Best-
    richie

    #456962
    richie
    Participant

    It is common to use it in the manner you described for a chemist —

    #456963
    Linda L
    Participant

    Calida,
    My first experience with LDN was unsuccessful. Taking 1mg for two weeks was too much. I take thyroid medication /Oroxine/
    So in my case, whilst there are no doctors here experienced in LDN, should I give up?

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #456964
    Linda L
    Participant

    Those patients who are taking thyroid hormone replacement for a diagnosis of Hashimoto’s thyroiditis with hypothyroidism ought to begin LDN at the lowest range (1.5mg for an adult). Be aware that LDN may lead to a prompt decrease in the autoimmune disorder, which then may require a rapid reduction in the dose of thyroid hormone replacement in order to avoid symptoms of hyperthyroidism.

    From http://www.lowdosenaltrexone.org

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #456965
    Calida
    Participant

    Hi Linda

    Calida,
    My first experience with LDN was unsuccessful. Taking 1mg for two weeks was too much. I take thyroid medication /Oroxine/
    So in my case, whilst there are no doctors here experienced in LDN, should I give up?

    Perhaps you should wait until you (we) can find some research that shows how others benefitted from LDN when they had a reaction similar to yours. In my husband’s case, the severe Graves symptoms can be life-threatening but we were lucky that the doc’s suggestion to half the pill worked perfectly.

    I know that some Graves/Hashi’s patients were slowly adjusting their LDN doses as they simultaneously adjusted their thyroid meds. It requires a delicate balance and the best case scenario has an experienced physician overseeing the process.

    Those patients who are taking thyroid hormone replacement for a diagnosis of Hashimoto’s thyroiditis with hypothyroidism ought to begin LDN at the lowest range (1.5mg for an adult). Be aware that LDN may lead to a prompt decrease in the autoimmune disorder, which then may require a rapid reduction in the dose of thyroid hormone replacement in order to avoid symptoms of hyperthyroidism.

    From http://www.lowdosenaltrexone.org

    Yes, that’s the exact quote I found often while researching thyroid disease and LDN. It seems that LDN affects thyroid function faster than it helps rheumatic diseases so most aren’t prepared for what seems like a sharp increase in thyroid meds efficacy shortly after starting LDN. Hypo patients can go hyper quickly, there’s quite a bit about that in LDN forums, but not much info on Graves/hyperthyroidism and LDN.

    My doctor has used LDN to treat his rheumatic patients for years. Ordinarily he wouldn’t prescribe it for thyroid patients but my husband’s high CCP and RF needed to be addressed so the doc prescribed LDN with some encouragement from my husband :).

    Linda, if you belong to Facebook, check out the group “Beating Thyroid Disease with LDN”. I’ll have a look at their files to see if I can find anything that may help you.

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #456966
    Linda L
    Participant

    Thank you Calida.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

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