Low Dose Naltrexone

[Melissa072]

Was wondering if anyone had heard of LDN or low dose naltrexone.
I googled LDN and the original female who took this in doses of 4.5mg never had a relapse until after 12 years of taking it, had 1 relapse then went back on it and has never relapsed again in,  so the only relapse was after 12 years and she's been taking it now for 17 years.
Google LDN and have a read for yourselves, it's very interesting.

[Wobbly]

very interesting...I wonder if it is being tested...

andi

[Melissa072]

Don't know although they are trying to get it to become tested.
This is the stuff that really annoys me, I'm looking into it some more, even the mayor here is as he suffers from ms.
I have emailed them and asked if it really stops attacks then why the hell isn't is available and known to all and they told me it's because its so cheap, about $1 a day and the drug companies don't want to touch it as they won't make any money on it.

[Wobbly]

what...well, that's strange...who told you that??  

you must be joking...

andi

[Quixotic1]

Hi, there is a ton of anecdotal information on LDN on the net.  Like many "cures" there are hundreds of people who claim to have had their MS stopped or cured by it.  In a nutshell, Naltrexone was originally used in doses of 50mg in the treatment of opiate addiction.  It blocks the optiate receptors.  It also raises the body's endorphin receptors in low dose.

In the early 90's someone noticed that in low doses it also had an effect on the immune system.  Since then there has been an underground movement to use it for MS.  It is true that because naltrexone is a "public" drug, no company will make any money off of it.  Thus, there is no monetary benefit to studying it and selling it.  A month's worth of LDN costs less than $5 plus compounding fees.

There has been one very short study using LDN along with a DMD to see if it was safe and was an added benefit.  This was done at UC San Francisco and funded by interested people who have been promoting LDN.  The results were that it appeared safe.  I haven't read whether the LDN + DMD had any greater benefit in the progression of their disease than the LDN alone, but remember it was a limited study.  I have heard there are at least two other studies currently being done.  I don't know their specifics.

Most docs that I have read (and who I would trust to be fair and scientific about this) feel that LDN certainly can add an improved quality of life, but are uncertain long term benefit.  In reality the jury is still out.

Be aware that ,because of the increased production of endorphins many people are going to "feel better" on it.  Also, because the long-term controlled studies have not been done, we don't know if the people who claim to be free of relapses for years might now be having a benign course of MS during that time anyway.  Perhaps the people that did not have any improvement just didn't continue with it and didn't bother to post their findings on a forum.  That's the trouble with not having controlled studies.

On this forum, where we tend to gravitate toward the scientific end of things we have had about 6 people report their experiences with LDN.  And these have spanned the spectrum from a woman recently who believes it has completely held off her disease, to people who feel much better and don't know yet, to people who had no apparent benefit from it, to one who feels much better on it, but whose MS has progessed fairly rapidly on it.  

People who take narcotic pain meds, even intermittently, CANNOT use LDN.  One here on the forum was on multiple and high dose narcotics, was placed on LDN by an irresponsible doctor.  She went into severe, withdrawal, had a hypertensiveive crisis from the pain, spent three days in the ICU and may have had a stoke from the whole thing.  This could have been avoided if the doctor had only checked her list of meds and not started the LDN.  Other than that LDN is very benign and has no known side effects.

Personally, I believe that if someone can feel better with this disease (whether or not the LDN slows MS) then I am definitely all for it.  Yay, for endorphins!  Please pass the bowl!

I have tried to be short, but accurate and fairly even handed in this.

I do invite others to add their experiences.  Just remember that one person's or 1000 person's stories are just testimonials (like the infomercials on TV late at night).

Quix

[monotreme]

My husband is on LDN and feels great.  That is why we were both so sad and disheartened when we could see, from a neurological assessment, that his MS has progressed quite severely in the past year.

So we end up feeling cheated, and fooled by thinking that he was doing so good, but in the meantime the disease was marching on.

So yes, LDN makes you feel great.  But the results are highly individualized on whether or not it stops the progression of the disease.

Elaine

[baskets]

Hi Elaine, can I ask you a question... did your husband s MRI change or
was it just his neurolgical assessment that changed.
=
If the disease marched on - how did you find that out
I am assuming it was additional leisions
=
can you please let me know
Thanks Much
Josephine

[Bev707]

My husband has been taking LDN (4.5mg) for four years since he was diagnosed with MS.  He has never (and will never!) take any CRAB drugs and not Tysabri which still appears to be lethal for some.   I cant say he feels better - he hasnt gotten any particular symptom relief but that is not the purpose of LDN.  Some people do have symptom relief but they are the lucky ones.  What he does have though is NO disease progression, No flares, no exacerbations, NO new lesions.  His annual MRI`s come back showing plenty of inactive lesions that were there in the beginning but nothing new.  
It costs less than $70 a month, one pill at nightime, no side effects.  He works in a physical job every day.  He still walks into walls occasionally, he still reacts badly to heat, still suffers fatigue but he is no nearer to being any more disabled that he was four years ago.
His neuro is at UCSF and has been prescribing the LDN the whole time.  The recent trial was so short it was as good as useless.  It was funded in part by people like us who are passionate about getting some proper clinical trials done so people who are not happy to "disobey" their neuro`s, can finally get their scrips without so much trouble as it is now. I`m fairly convinced it`s all about the money in the case for LDN.  It`s cheap and theres no money to be made from it. For us it was a no brainer.  To pay over $1,000 a month to have injections, suffer the side effects etc with only a 30% chance of being helped by the drug was terrible odds. We were lucky and found a neuro that was prepared to think outside the box and prescribe it.  PLENTY of FDA approved meds are prescribed off label and the dose of LDN is so small it`s almost homeopathic.  If people can take it in 50mg doses, then theres no way a 4.5mg dose could be toxic.  
It does not work for everyone, nothing works for everyone but until a cure is found, we will stick with LDN and spread the word.  There are literally thousands of people all over the world that take it for MS, Crohns, Arthitis, Fibromyalgia, autism - the list is endless.  There are or have been clinical trials for the various diseases in Italy, Penn State Hospital (on now for Crohns) Stanford ( now for Fibromyalgia).....I`m probably forgetting some.....
The only thing you cant take is opiates so if you are in pain and take opiate pain relief then it`s no good.  You can take it in conjuction with Copaxone but none of the other CRAB`s.
I`ll be happy to answer any questions if anyone is looking to get more info but if you Google LDN pretty much everything is on the websites.  
Best wishes to everyone and good health.

[Bev707]

I just noticed that youre from Australia - there are a few people in my Yahoo LDN from Oz that post regularly who take it.  Just thought you`d like to know that it`s over there!
Think one of them might be in Melbourne - not sure....my daughter lives in Sydney so even though I`ve never been, I`m very connected to aussies!
Bev

[Bev707]

sorry - I made a mistake - it costs less than $70 for THREE months which makes it almost as cheap as milk!

[monotreme]

My husband's heat intolerance got much worse.  His legs would swell in the heat too.  He was having more spasticity in his legs.

So he went to a physical therapy clinic and for the first visit they did a full evaluation.  He failed every single test for balance.  he can not walk one foot in front of the other.  His neurological deficits have just exploded in front of our face.

Now, he had less fatigue on the LDN.  he looks and feels better, and he has a good outlook.  

But as a nurse, I could not ignore the increased amounts of neurological abnormalities from 2007 to 2008.  So he got officially diagnosed and went on Copaxone.

I was one of those people who thought everything could be solved with LDN and supplements.  But  now I obviously had to change my approach and accept the fact that natural therapies do not always have a place.

As far as any new lesions, he has not had a MRI since going on LDN.  His neuro status is so bad that they MS neuro did not think a new one was necessary.

In the U.S., we pay 90 cents a pill for the LDN (3.5 mg).
Elaine

[monotreme]

I also wanted to add that my husband has Primary Progressive MS.  He is on Copaxone and is staying on the LDN.  He is also continuing his 30 supplements (30 pills, not 30 different supplements) each day.

The pharmacist who supplies us with the LDN did mention to me that LDN has had a poor rate of success in treating PPMS.  I know there are different stories on the web but that was his experience with various patients which gave him that opinion.

So since the LDN makes him feel better and improves his quality of life and outlook, he will stay on it.  But we believe he also needs Copaxone.

Good Luck,
Elaine