I have had something like EM and CRPS for almost two years. I had to use wheelchair because of pain in right foot. Now I walk without pain. I discovered Low Dose Naltrexone on line, and have been taking it daily for two months. A little over two weeks ago I was in bed, having a flare (6-8) and the next day, I was walking with no pain. Today is the fourteenth day with little pain. A week ago, the pain started in the toes of my left foot. Now the LDN has gone to work on those new pain receptors.
Most doctors don’t know about LDN. You probably must educate them. They know about regular dose Naltrexone 50mg as it has been used for many years in the treatment of addictions. My internist would not give me a prescription for LDN, but gave me 50mg Naltrexone. I dissolve a tablet in 50cc’s of distilled water, then use a small syringe to take out my dosage and but it in milk, yogurt, etc. because of bitter taste. Start with 1.5 mg for two weeks, then increase .5mg each week, until 4mg. I had a hangover when taking 5mg, so cut it down, and started at 1.5mg. Now taking 3mg, and it seems enough. There are compounding pharmacies that make LDN; it is expensive, ($25 to $45 per month).
This is true, unless the doctor doesn’t know anything about the
medicine, and many online doctors have a lot of good info. This
Naltrexone has been found to have no serious side effects or
interactions at 50mg over decades of use. Doses of 5mg or less have no
problems in a decade of use.
Here is the problem. LDN is well known, in fact it was a subject at the last College of rheumatology. It is soundly rejected. The reasons are many. No peer reviewed study has ever come up with a more than 50% efficacy rate. The simple explanation is the chances of it working are the same as it not working. There is a reason when you research it, the first 9 pages on any search are all from proponent organizations but at best pseudo science. It can not POSSIBLY work according to their own research. Their claims that low-dose naltrexone as an effective treatment for both immune dysfunction and autoimmune diseases is contradictory. Simply put if improved the immune system It would make autoimmune disease worse.
Have people had some effect? Of course any medication is proven to be 35% - 50% effective because of the “placebo effect” In the case of LDN it is a binder to the MU receptors. For a person who has “pain” as the result of hyper analgesia or taking too much pain meds over a long period of time, this binding can possibly restore the opiod receptors (the way pain management naturally occurs) to some level of stasis.
But more research is needed. So far there has been some effect with FMS (depending on the type) but then FMS is NOT generally autoimmune. What they have learned is that pain management becomes very difficult when needed with LDN patients (imagine not having pain meds NOT work)
Because most docs won’t use it or deny its effectiveness certainly doesn’t mean the don’t know about it or need educated. It does mean that until there is real, repeatable, verifiable peer reviewed evidence (and that doesn’t mean dozens of pro LDN websites or “research foundations” that have not produced anything but anecdotal studies) any ethical physician will NOT use or prescribe it. We don’t make patients into guinea pigs.
What has been studied a lot lately is the mental health effects of LDN in regards to anxiety and depression as it does effect those control mechanisms. Preliminary data suggests a problem.
After two years of severe CRPS pain in foot, unable to walk, I am now walking and driving without pain or symptoms. I have taken LDN for two months. No side effects. No other medications for pain. When someone is suicidal, it is sometimes worth it to try something that is not FDA certified (due to no Pharmas willing to subject it to testing. No profit in it.) In the studies by doctors, the drug was twice as effective as those taking placebos.
I’m glad you got relief and if you believe its the LDN good for you. However you need to be aware of a couple of things. Homemade LDN as you described doesn’t deliver any naltrexone to the system and can cause harm (its a slight chance given the amounts. The 50 mg tablets come with a special enteric coating so that the tablets will only be absorbed in the small intestine. Naltrexone is unstable at the acid gastric pH, and need to be protected from degradation. In the prescribing instructions there is a black box warning against crushing those tablets as it can cause considerable gastric distress. IF you use LDN make sure its properly compounded.
Choose your compounder carefully. 75% of Naltrexone is found in the urine. Meaning that because it is liver metabolized but it is so slowly absorbed ( dose amount doesn’t matter) most of it is urinated. Because there is so little Naltrexone absorbed at 5 mg a lot of compounders won’t necessarily produce the best product.
I’m not sure the internet is the best place to learn pharmacy just as I am equally certain the Industry that has popped up around LDN has produced poor science.
BTW after market research for off label use is rarley done by “pharma” not because of “profits” but rather because of conflict of interest. Yale has done the most LDN research followed up by USC, as have several NIH labs. There simply is nothing there. FWIW med vs palcebo is NOT acceptable science. I don’t want to start a medical statistics seminar. “But twice as effective as placebo” is pseudo science. What it means is depending on the placebo numbers that the med is effective 50% assuming a normal placebo effect.
I might also point out “Docs” don’t do studies on their own patients EVER or at least don’t present it as a “study.” Those studies are just like internet forums. They are presenting anecdotal observations based on an undefined cohort.
As a former scientist (“rocket”) I always research thoroughly before taking any medicine or supplement, or recommending it to anyone. Obviously, everyone should be careful about information on the internet, especially on forums. Much misinformation is out there, especially from interests who want to protect the medical establishment. The article from ModSupport is an example of the misinformation. I.E. A variety of Naltrexone 50mg tablets do come coated for timed release, and these are NOT used for LDN. And double-blind testing uses a group with the drug vs. a placebo group. Anyone can check the facts by going to the link in my original article.
They do come entically coated for a reason which is to prevent break down by gastric acids which renders the medication ineffective. Thats why it is necessary to have compounded enteric coated 4.5 mg tabs or simplified no actual medication is being delivered. That is want is used in many of the “studies” and possibly why some have succeess and others do not.
I didn’t find the study you referred to for myalgia nor did any of the studies I did find include a “natural history” group (required for or a group exceeding the magic number of 67 necessary to validate a margin within one standard deviation (30% is less than 1 standard deviation) The natural history group is comlelty necessary with thies type of disesase that ar marked by “flares” and other variables. P-NH indicates the efficacy of the entire treatment process or the magnitude of the “placebo response”. The results of these comparisons then determine whether or not a particular drug is considered efficacious. Without that number double blind are meanigless. None of the studies included a cohort definition necessary for “randomness” but were rather patients receiving treatment from the providers doing the study. “improvement” was largley based on the least dependable methof of study 'survey" which is of course the same method that predicted a huge victory for Hillary Clinton. And these were much larger studies. Consequently the studies done by the well known marketing group LDN research Trust members have no more value than studies by any other non regulated alternative therapy groups. As none of those studies have been repeatable or verifiable the only conclusions that can be drawn that more research needs be done before its proclaimed a “medical treatment”
Understand I don’t have a problem with alternative treatment so long as it isn’t presented as something more than it is. I think we have all sought alternatives at one time or another. The push from the LDN groups is very concerning.
I totally agree about the push from the LDN groups is concerning. Maybe fine for people who have the ability to know the problems, but there will be people who haven’t and then it can be dangerous.
I started life as a scientist and therefore like Sammy I look up everything I take first, except the one occasion when I took the Gabapentin. It was a bad time I had just lost my husband and I wasn’t really in a fit state to make judgements.
As far as alternative medicine goes personally I think a lot of it is it works because people believe in it. I have had various of alternative medicine treatments in the past but non have done anything probably because I didn’t do it thinking it would work, rather had neutral attitude. I might be wrong, it might just be me that doesn’t respond to some things, like medication we are all different in the effects it has on us.
It is difficult for me to see a financial reason for the LDN “push”, as Naltrexone has been used for decades and is generic and cheap. I think the push is from dozens of doctors who have been treating a variety chronic painful diseases and found a surprising number of patients who were helped by LDN. And by hundreds of people who give their anecdotal evidence of finally having found something that relieves their “uncurable” pain.
For those who are desperate to end their suffering, and are willing to try something that helps a good percentage of people, that a few report side effects of discomfort, insomnia, but so far nothing more serious, I suggest watching an informational video by physicians in the UK, and USA. http://vimeo.com/131314110/
I am in a lot of pain 24/7 but I find it’s worse not keeping busy. I suppose I am lucky that I do web design for my local RSPCA all voluntary. Where possible I try to keep my mind off the pain doing things like that. I also keep in touch with friends from all over the world. So with these things and it being hard keeping my bungalow in order with being in a wheelchair due to having a leg amputated I don’t have much free time.
You state you saw no “financial incentive” no one here claimed there was but the books seminar online groups are hardly “doctors” Those of us that have been around a while have seen these groups come and go. They sound so plausible until it blows up. Sadly it is sometimes Docs that are the worst. That is not to say there aren’t a few groups that don’t profit.
In the LDN world for example there is the “LDN Research Trust” A picture of their international headquarters is below. They took in $65,000.00 USD in donations in Great Britain alone. They didn’t have to report any of their veemo profits (which are pretty good if one sits through a whole video, book sales etc through Amazon, Seminar/retreat income or other International Donations.
Their Facility certainly inspires confidence they are on the cusp of massive “trial Studies” that they are going to finance. Maybe they will get there and determine just how "healthy LDN therapy, long term effects that have lead to the med seldom being used for its intended purpose may not effect Low Dose Regimes. Maybe someone will even stdy its effect on Myalgia instead of just MS and FMS. They may even figure out how to treat breakthrough pain for LDN users. But for now, its not ready for prime time.
