Useful LDN Information

[WithGrace]

New scientific evidence highlights anti-inflammatory properties of LDN in 2014 NIH published study, “The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain.”

I'm allergic to anti-inflammatory drugs like ibuprofen. Has anyone in these trials experienced any allergic reactions?

[knuckle]

It is highly unlikely you will be allergic to LDN because it's mechanism of action is a 3-4 hour blockade of the Pituitary Gland that results in a 16-18 Endorphin surge.

Endorphins are Hormones that regulate Tcell proliferation

LDN is completely non-toxic. Low dose aspirin is more dangerous.

[durgastiger]

I finally found a Dr. to prescribe LDN and just got it today.

I'm taking Tecfidera & Ampyra. Can someone give me a suggestion for day or nite? I'm a little scared since I also have steroids and viagra. Am I going to turn into the HULK?

[J-Bo]

That's great, durgastiger! I'm also on Tec & Ampyra, but can't help you with steroids or Viagra. I still haven't found a doctor who will prescribe LDN for me. I wonder--how do you go about finding a doctor who will? Both doctors I asked said unequivocally, absolutely, positively NONONO!!! Never ever will for me or anyone. What's up with that reaction?

Anyway, hope it helps you...please let us know!

[knuckle]

You should take your LDN about an hour or so before bedtime.

LDN will not contradict with Tecfidera, Ampyra or Viagra.

As for neuros...those who resist prescribing LDN typically don't know much about the drug, how it works, the research, how it is prescribed, where to get it, etc., and don't really want to make the effort to find out. They may also feel at risk prescribing LDN versus another MS drug because LDN is not approved for MS.

If you want to keep working on your neuro, I suggest you position LDN for MS-related fatigue and cognitive issues. Prescribing LDN this way is no different than the many other drugs used off-label for MS, such a Baclofen, Providgil, Valium, etc. These drugs can be very toxic, and expensive, when compared to LDN, which is non-toxic. Less toxic than low dose aspirin.

Neuros regularly prescribe chemo off-label for MS and if your doctor thinks LDN is going to be detrimental to your MS, or general health, he or she simply is ignorant about LDN.

So if you're confronted with this dilemma, you will likely have more success with a General Practitioner familiar with alternative medicine.

I also suggest contacting a compounding pharmacy that makes LDN and ask them if they know of any doctors they've worked with in your area. Skip's Pharmacy in Florida would be a good place to start as they are the largest LDN provider in the country and ship orders to most regions.

For the record, I buy my LDN from Skip's and my neuro prescribes my LDN (but I had to educate him).

Unfortunately, unless a big pharma sales rep is pushing the drug, or there are lucrative speaking engagements and conferences involved, many neuros will remain ignorant about LDN.

Likewise, the National Multiple Sclerosis Society. You would think the NMSS would be interested in LDN but they aren't because there is no money in it. I think that should be very troubling from an ethical perspective.

[gubbins]

That's great, durgastiger! I'm also on Tec & Ampyra, but can't help you with steroids or Viagra. I still haven't found a doctor who will prescribe LDN for me. I wonder--how do you go about finding a doctor who will? Both doctors I asked said unequivocally, absolutely, positively NONONO!!! Never ever will for me or anyone. What's up with that reaction?

Anyway, hope it helps you...please let us know!

Word from a local pharmacist is that if neuro wont prescribe a Natropath probably will.. Worth checking it out!

[J-Bo]

Word from a local pharmacist is that if neuro wont prescribe a Natropath probably will.. Worth checking it out!

Thanks for the idea, gubbins. I don't think that naturopaths can legally write prescriptions in the USA. Same as MMJ here--won't happen, at least in my state, without much kicking and screaming. But I appreciate the suggestion.

[Myoak]

Hello WithGrace,

I’m so sorry I did not see your post. To answer your question… I have not read of an allergic reaction to LDN in any trial. Remember, LDN has been trialed in children and adults with Crohn’s Disease. LDN has been trialed in HIV+ patients. There have been a good number of human trials of LDN in various diseases with no mention of allergic reactions in the trial literature. On that basis, although anything is possible, I believe an allergic reaction would be quite rare.

The safety of LDN is recognized by doctors who are knowledgeable about it. Unknowledgeable doctors usually freak out because they know little about it and apparently make no effort to learn more. Many doctors get confused by the simple fact that naltrexone (which they are aware of) and low-dose naltrexone act as direct opposites. LDN increases what naltrexone diminishes. Actually, it is the body’s response to the temporary block of LDN that provides the benefit. So it is a very natural response. The body is doing the work, not the medicine; which is why it is extremely safe. The medicine, low-dose naltrexone, is metabolized in a few hours and is gone; not so with higher doses of naltrexone.

Most doctors have supersized egos which prevent them from absorbing much from a lowly patient so good luck on any efforts toward enlightenment; it doesn’t happen often. Probably have to see an alternative doctor to get a prescription. If you keep looking you will find one, J-Bo.

WithGrace, I apologize for such awful delay in responding. I hope you are well.

[gubbins]

Thanks for the idea, gubbins. I don't think that naturopaths can legally write prescriptions in the USA. Same as MMJ here--won't happen, at least in my state, without much kicking and screaming. But I appreciate the suggestion.

What a can of worms LDN has caused with some doctors. I talked to my GP about it and asked if he would do a bit of research - which he did. His answer was 'certainly seems like worth a try, but speak to Neuro when you see him. Fortunately that was just a few weeks away. I didn't have to raise subject, he brought it up to me and suggested I give it a try. WOW!!

Have been on it to 12 days now and yesterday felt a lot of the day was walking better. But as we all know with MS the longer your day goes on the more fatigued you become. Then today for the first time in about 5/6 years am able to actually lift my left foot off the ground without having to physically lift with my hands - delighted.

Now just hoping this continues - who knows - only the MS gods have the answer to that one.

Hope all of you trying to get LDN have success. Keep beating on that door!

[Lynn1962]

What a can of worms LDN has caused with some doctors. I talked to my GP about it and asked if he would do a bit of research - which he did. His answer was 'certainly seems like worth a try, but speak to Neuro when you see him. Fortunately that was just a few weeks away. I didn't have to raise subject, he brought it up to me and suggested I give it a try. WOW!!

Have been on it to 12 days now and yesterday felt a lot of the day was walking better. But as we all know with MS the longer your day goes on the more fatigued you become. Then today for the first time in about 5/6 years am able to actually lift my left foot off the ground without having to physically lift with my hands - delighted.

Now just hoping this continues - who knows - only the MS gods have the answer to that one.

Hope all of you trying to get LDN have success. Keep beating on that door!

Glad you are having success with LDN!

What dose are you taking?

Lynn

[J-Bo]

I just read Dr. Chopra's paper on LDN for pain on the LDN Reasearch Trust web site, and in it, there's a statement that:

Users have reported to notice a difference after 9 to 12 months.

Wow, is that true? That's much longer even than the wait for antidepressants and anti-siezure meds to see if they're working! Has anyone here had that experience with LDN for pain?

[gubbins]

Glad you are having success with LDN!

What dose are you taking?

Lynn

4.5mg. Time will tell

[Myoak]

J-Bo, last year I attended the LDN conference which Dr. Chopra addressed. Out of his own mouth I heard him describe patients who had overnight success with LDN relieving pain which they had suffered for years. Of course, not all his patients had that experience but some did. I can tell you Dr. Chopra was enthusiastic about the performance of LDN for chronic pain.

Maybe re-read because 9-12 months would be unusually long. Possibly an error. Referring to my notes of the Q&A, Dr. Jill Smith said, "If LDN works results will be seen by the 12th week." She trialed LDN in children with Crohn's Disease, with FDA approval, of course.

It may be different in MS. Dr. Chopra is a pain management specialist.

Best

[Myoak]

The Safety of LDN has been firmly established in human trials with children as young as 8 years old.

Seven studies linked below comment on the remarkable safety of LDN; none more so than #5 in this list.

1. Pilot trial of low-dose naltrexone and quality of life in multiple sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/20695007
Selected quote, “LDN was well tolerated, and serious adverse events did not occur. LDN was associated with significant improvement on the following mental health quality of life measures…”

2. A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis http://www.ncbi.nlm.nih.gov/pubmed/18728058
Selected quote, “Our data clearly indicate that LDN is safe and well tolerated in patients with PPMS.”

3. Low dose naltrexone therapy in multiple sclerosis
http://academic.research.microsoft.c...cation/5564648
Click on the “www.iscomplete”pdf in this link for this quote: “The use of LDN has gained widespread public acceptance, in spite of the lack of enthusiasm from prescribing physicians. It is incumbent upon us to investigate this drug, for it offers the potential of an oral therapy for MS with few side effects.”

4. Multiple Sclerosis: Molecular Mechanisms and Therapeutic Opportunities
http://www.ncbi.nlm.nih.gov/pmc/arti....2012.5068.pdf
Selected quote on page 31 of the pdf, “Natrexone (opioid receptor antagonist) improves mental health and decreases spasticity of MS patients (99, 164).

5. The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain
http://www.ncbi.nlm.nih.gov/pmc/arti...ticle_2517.pdf
Selected quote, “One of the most exciting aspects of LDN is the low reported incidence of
adverse side effects. We have not seen incidences of ulcers, renal insufficiency, interference
with warfarin and other common medications, increased heart attack or clotting risk, or other
problems that can be seen with nonsteroidal anti-inflammatory drugs. We have observed no
cases of severe adverse events in our research, and none have been reported from other
laboratories.

6. Single cohort study of the effect of low dose naltrexone on the evolution of immunological, virological and clinical state of HIV+ adults in Mali http://www.academicjournals.org/arti...20al%20(1).pdf
Selected quote, “The extensive medical evaluations and clinical testing… conducted during this cohort study support the generally accepted characterization of LDN as “a safe medication with no side effects” (Smith et al., 2007: Roy and Loh, 1996; McCarthy et al., 2001; Bihari et al., 1988).”


7. Safety and tolerability of low-dose naltrexone therapy in children with moderate to severe Crohn's disease: a pilot study. http://www.ncbi.nlm.nih.gov/pubmed/23188075
Children ages 8 to 17 were given 0.1mg/kg in this trial.
“RESULTS: Oral naltrexone was well tolerated without any serious adverse events… 67% had improved… Systemic and social quality of life improved with naltrexone treatment”

Dozens of additional human trials and reviews of scientific literature can be found which conclude LDN is safe and beneficial.

The evidence is overwhelming to the diligent. You have to look for evidence to find it. Unfortunately, most doctors have little time and less incentive to review LDN trials even though their patients, particularly SPMS or PPMS, may be sent home to endure horrible MS symptoms with no treatment at all.

I am so sorry you have to search LDN out on your own. Fortunately, you can find doctors who are educated about LDN. Most often they are alternative but at least it is possible to get a prescription and give LDN a trial for yourself, if you want.

[J-Bo]

Hey Myoak, knuckle, and gubbins, thanks again for your excellent information. It's great that so much of this has come from the NIH, too, instead of Dr. Zombie Bob's Juju Juice Emporium. (I don't personally know of such a web site, but feel that there ought to be one.)

I'm glad to hear that LDN probably doesn't take that long to show results. I went back to the paper, and it definitely says 9-12 months, but maybe Dr, Chopra meant to say weeks, not months. (Can someone please explain the link rules here? I see some people's links removed by moderators, and then others left in. I've read the FAQs and all, but still haven't a clue. Is it a user's permissions thing, or...?

Anyway, you have provided some really great documentation we can use to help persuade our doctors. I still find the degree of negativity toward this medication inexplicable. I mean, total non-starter, discussion ender. I get that the absence of profit potential is a very real factor, but the reaction I've gotten from more than one doctor would be more appropriate if I'd suggested that we try a tincture made from newt's tears, stink bugs, and werewolf toenail clippings. (hey, it's Halloween !)

All of that said, I've stumbled upon a possible breakthrough this week: I was merely kvetching to my pain management doctor's PA about that doctor's knee-jerk reaction to LDN, and the PA says "You know, there are some doctors who will prescribe it" and gave me a name! So I hurried to my car, fired up the Google machine on my phone, found him, and made an appointment for Nov 10! I can't believe she told me that, and that she seemed very well-informed about LDN, but I'm glad that I was in cranky grousing mode at the right time with the right person. You never know, hunh?