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Low Dose Naltrexone....thoughts?
ok so Need some opinions here. I am currently on Copaxone and feel ok...BUT I have been a bit more tired lately and had some tingling that I have not had in a year or more. My herbalist suggested I check out LDN. I see my Nuro in June and am in the fact digging phase. I have read what I could on line but, much of what I have found so far, is a year or more old. Just curious if anyone here has been on it or is taking it and your experiance.
PS - I am so glad to say that it is offcially one year out from DX and I do overall feel prett good. just want to stay that way! ALSO I could not have made it this far so well with out all of you so...... THANKS!
PS - I am so glad to say that it is offcially one year out from DX and I do overall feel prett good. just want to stay that way! ALSO I could not have made it this far so well with out all of you so...... THANKS!
Natrexone has long passed it patent protection period and is now generic and and no big profit to be made from a clinical trial of a generic drug. Sad but true. From the Low Dose Naltrexone website...
"There is growing recognition in the scientific community that autoimmune diseases result from immunodeficiency, which disturbs the ability of the immune system to distinguish "self" from "non-self". The normalization of the immune system induced by LDN makes it an obvious candidate for a treatment plan in such diseases.
The experience of people who have autoimmune diseases and who have begun LDN treatment has been remarkable. Patients with diagnoses such as systemic lupus, rheumatoid arthritis, Behcet's syndrome, Wegener's granulomatosis, bullous pemphigoid, psoriasis, and Crohn's disease have all benefited.
Because LDN clearly halts progression in multiple sclerosis, its use has been more recently extended to other neurodegenerative diseases, such as Parkinson's disease and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) whose etiology remains unknown but for which there is suggestive evidence of a possible autoimmune mechanism.
In addition, people with fibromyalgia and chronic fatigue syndrome have had marked improvement using LDN, suggesting that these entities probably have an important autoimmune dynamic as well."
"There is growing recognition in the scientific community that autoimmune diseases result from immunodeficiency, which disturbs the ability of the immune system to distinguish "self" from "non-self". The normalization of the immune system induced by LDN makes it an obvious candidate for a treatment plan in such diseases.
The experience of people who have autoimmune diseases and who have begun LDN treatment has been remarkable. Patients with diagnoses such as systemic lupus, rheumatoid arthritis, Behcet's syndrome, Wegener's granulomatosis, bullous pemphigoid, psoriasis, and Crohn's disease have all benefited.
Because LDN clearly halts progression in multiple sclerosis, its use has been more recently extended to other neurodegenerative diseases, such as Parkinson's disease and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) whose etiology remains unknown but for which there is suggestive evidence of a possible autoimmune mechanism.
In addition, people with fibromyalgia and chronic fatigue syndrome have had marked improvement using LDN, suggesting that these entities probably have an important autoimmune dynamic as well."
No negativity about the med here RedStar - Just correcting and clarifying the information you provided for accuracy. And, pointing out critical information, i.e., the purpose of the study, the length of the study, etc.
Our current and future members are counting on us to keep the facts straight. Wouldn't want anyone to get the impression this was a disease modifier (you quoted "halted progression"), and especially had to clarify since MSMom posted this question seeking input.
-Shell
Our current and future members are counting on us to keep the facts straight. Wouldn't want anyone to get the impression this was a disease modifier (you quoted "halted progression"), and especially had to clarify since MSMom posted this question seeking input.
-Shell
LDN is cheap so clinical trials are few and far between. The last trial i have found was done three years ago. "Pilot trial of low dose naltrexone and quality of life in MS" published in February 2010 in the Annals of Neurology. The conclusion: "LDN significantly improved mental health quality of life indices. Further studies with LDN in MS are warranted."
LDN is cheap, shows improvement for trials and anecdotally, and the side effects are minor should you suffer them at all. I don't see what all the negativity is about to be honest. What you lose is $15 - $40 a month. What you gain could be priceless. But you won't know until you try it.
LDN is cheap, shows improvement for trials and anecdotally, and the side effects are minor should you suffer them at all. I don't see what all the negativity is about to be honest. What you lose is $15 - $40 a month. What you gain could be priceless. But you won't know until you try it.
You quote here the study by Dr. Maira Gironi, an Italian neurological researcher..... the data to the study was not available unless paid for (sage pub).
Also, the abstract says "Neurological disability progressed in only one patient." So, this is where I'm guessing conclusions have been drawn that no others experienced increase in disability? Or, as they say HALTED progression? How did they measure it? Why is that that data not readily available?
BUT, more importantly at this time from what IS available:
-The primary end points for the 40 patients were safety and tolerability.
(safety and tolerability - not disease/disability progression)
-Secondary outcomes were efficacy on spasticity, pain, fatigue, depression, and quality of life. Clinical and biochemical evaluations were serially performed."
Remember: This was a study on "40 patients" for "6 months" aka "24 weeks"
All - Be care with what you choose when looking to treat MS. There are vast differences between "Symptom Treatment" and "Disease Treatment." Each are important! LDN is at this time, not a disease treatment. Maybe more will be learned in the future, but as of now, this is what we know by way of facts.
Also, the abstract says "Neurological disability progressed in only one patient." So, this is where I'm guessing conclusions have been drawn that no others experienced increase in disability? Or, as they say HALTED progression? How did they measure it? Why is that that data not readily available?
BUT, more importantly at this time from what IS available:
-The primary end points for the 40 patients were safety and tolerability.
(safety and tolerability - not disease/disability progression)
-Secondary outcomes were efficacy on spasticity, pain, fatigue, depression, and quality of life. Clinical and biochemical evaluations were serially performed."
Remember: This was a study on "40 patients" for "6 months" aka "24 weeks"
All - Be care with what you choose when looking to treat MS. There are vast differences between "Symptom Treatment" and "Disease Treatment." Each are important! LDN is at this time, not a disease treatment. Maybe more will be learned in the future, but as of now, this is what we know by way of facts.
Untraceable? The comment is under the article under highest rated comments. Anecdotal evidence has immense power. It takes billion dollar drugs off the market. Permanently.
***
"A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis" was published in the journal Multiple Sclerosis in September 2008. 40 patients with Primary Progressive MS took LDN for six months and the conclusion of this study was LDN was not only safe and well tolerated, but halted the progression of the disease in all but one patient.
***
"A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis" was published in the journal Multiple Sclerosis in September 2008. 40 patients with Primary Progressive MS took LDN for six months and the conclusion of this study was LDN was not only safe and well tolerated, but halted the progression of the disease in all but one patient.
P.S.Congrats on crossing over your 1 year mark! The first couple are super challenging, your doing it! ((hugs)))
Thank you Immisceo - I'm so glad you posted this response.
RedStar - I've uncovered zero evidence documented that LDN changes the course of MS by worthy sources. There is plenty of information where people "feel" better is concerned. And, if LDN does this for you and halts your two autoimmune diseases, the I'd be happy for you.
MsMom - If you are considering this - Please know that it's very important to not combine certain meds with LDN and I highly recommend that anyone considering it, speak directly with their diagnosing neurologist. It's just that important.
All - There is no large "conspiracy" due to money that stops LDN from becoming a treatment for MS. The makers of LDN can, like all other pharma companies, do what they have to do and study the effect on this disease if they haven't already to determine effectiveness. I'd not hold my breath.
-shell
RedStar - I've uncovered zero evidence documented that LDN changes the course of MS by worthy sources. There is plenty of information where people "feel" better is concerned. And, if LDN does this for you and halts your two autoimmune diseases, the I'd be happy for you.
MsMom - If you are considering this - Please know that it's very important to not combine certain meds with LDN and I highly recommend that anyone considering it, speak directly with their diagnosing neurologist. It's just that important.
All - There is no large "conspiracy" due to money that stops LDN from becoming a treatment for MS. The makers of LDN can, like all other pharma companies, do what they have to do and study the effect on this disease if they haven't already to determine effectiveness. I'd not hold my breath.
-shell
Please be careful about promoting articles from a source like a tabloid (The Daily Mail) and then a comment from an untraceable source responding to that article. That's several degrees of separation from good quality information.
The woman in the piece you mention has a diagnosis of primary progressive MS. There are no drugs specifically approved for this version of MS, hence her need to go for something off-label. Anything for her MS will be off-label in this instance. Countries with public systems like the UKs NHS or Ireland's HSE have to go with treatments that hold a evidentiary promise of working as they are funding them directly.
I agree that there is need for better research in this area and a way to make conducting such research more appealing, whether through orphan drug legislation and funding, direct MS Society funding, or funding for academic research at universities. But stories of positive experiences are just that. Stories. As they say, the plural of anecdote is not data. As someone with MS myself, "show me the data."
The woman in the piece you mention has a diagnosis of primary progressive MS. There are no drugs specifically approved for this version of MS, hence her need to go for something off-label. Anything for her MS will be off-label in this instance. Countries with public systems like the UKs NHS or Ireland's HSE have to go with treatments that hold a evidentiary promise of working as they are funding them directly.
I agree that there is need for better research in this area and a way to make conducting such research more appealing, whether through orphan drug legislation and funding, direct MS Society funding, or funding for academic research at universities. But stories of positive experiences are just that. Stories. As they say, the plural of anecdote is not data. As someone with MS myself, "show me the data."
I'm starting LDN next week. I don't have MS but i have two autoimmune diseases and i'm looking forward to trying it out. LDN upregulates endorphins which regulates the immune system, downregulates proinflammatory cytokines, promotes healing and stimulates DNA synthesis.
The Daily Mail published an article in March 2013 about LDN entitled "It costs just 82p a day, so why won't the NHS give us the drug that halts MS?" One of the top comments under the article...
"I live in Canada and have been taking LDN for MS for the past 10 years without a relapse. It seems nobody wants to do trials on LDN as the drug itself is too "cheap" to be worth their while. That is why the scientific evidence is weak. But, the anecdotal evidence is huge - it really is hard to find people who have not had some encouraging results with this drug. As always, it's all about money."
The Daily Mail published an article in March 2013 about LDN entitled "It costs just 82p a day, so why won't the NHS give us the drug that halts MS?" One of the top comments under the article...
"I live in Canada and have been taking LDN for MS for the past 10 years without a relapse. It seems nobody wants to do trials on LDN as the drug itself is too "cheap" to be worth their while. That is why the scientific evidence is weak. But, the anecdotal evidence is huge - it really is hard to find people who have not had some encouraging results with this drug. As always, it's all about money."
The way LDN works is it basically works like serotonin which makes you feel good. It is basically like taking an antidepressant that is why it works for so many things. It is a low dose of a drug used to get people off drugs. You can't take narcotics while on it.
Alex
Alex
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