rone327
06-02-2007, 11:11 AM
Have you heard about low dose naltrexone?
There are 30 years of "anecdotal evidence" that it stops the progression of MS with only positive side effects (like less fatigue, less pain, more physical stamina). The cost is less than $20 per month. The recommendation of LDN supporters is to get your GP to write a script and get the LDN from a compounding pharmacy by mail. This sounds like a light in a dark room.
There are 30 years of "anecdotal evidence" that it stops the progression of MS with only positive side effects (like less fatigue, less pain, more physical stamina). The cost is less than $20 per month. The recommendation of LDN supporters is to get your GP to write a script and get the LDN from a compounding pharmacy by mail. This sounds like a light in a dark room.
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lilc
06-02-2007, 01:18 PM
I've not only heard of it but asked my neuro for a scrip and gave her some stuff I printed about it. She says "no", but I keep meaning to find a doctor who WILL prescribe it for me.
My guess is that nobody wants to fund clinical trials on a drug that costs so little...
My guess is that nobody wants to fund clinical trials on a drug that costs so little...
Bearygood
06-02-2007, 01:22 PM
I've read about it as well but not extensively. I've actually seen it mostly come up in places that talk about alternative medicine. I'd be very interested in hearing any answers from neuros about this. lilc, do you know what your doctor thinks about this or why she said no?
MSNik
06-02-2007, 01:22 PM
I too, have read about it...there are hundreds of posts on this board alone on LDN....no neuro in the USA will prescribe this for MS....its not approved in this country for MS usage...however, in Canada among other places you can get a script for this drug. I have been to holistic doctors, and alternative medical centers, they still wont prescribe it for me being that I am dx for MS....intersting, huh?
Bearygood
06-02-2007, 01:29 PM
Think you might have hit the nail on the head, Nikki. Could reluctance to prescribe be because it's not approved for this use and could make docs susceptible to liability?
If that's the case though, I'd still love to hear any doc's "thoughts", even if they won't prescribe it!
Last thought -- if it hasn't been medically dismissed in the U.S. as being effective for MS, one can only speculate why research hasn't been supported.... :rolleyes:
If that's the case though, I'd still love to hear any doc's "thoughts", even if they won't prescribe it!
Last thought -- if it hasn't been medically dismissed in the U.S. as being effective for MS, one can only speculate why research hasn't been supported.... :rolleyes:
Bearygood
06-02-2007, 02:27 PM
Bearygood. Wanna take a shot at the fact that it might have something to do with the low costs, and the money pharmaceutical companies could potentially lose from this? I know that your mind works much like mine.....so you know where I am heading with this.
Oh yes, Nikki. That was what the "..." in my post was. ;)
Oh yes, Nikki. That was what the "..." in my post was. ;)
MSNik
06-02-2007, 08:02 PM
Great minds think alike, huh? :)
It really stinks that we have gotten cynical enough to realize that this is BEYOND Cynical and in fact is probably true.
LDN always sounded, in theory like a great possiblity. I wrote posts 5 months ago looking into it, asking how to get it. However, after spending WAY too much money (in your neck of the woods, the big city- remember Im only 45 minutes outside of NYC) I learned that this is an effort not worth pursuing. Too many people agree that this isnt going to work for MS in the long term; however, no one has ever said it wasnt of great use to elminate symtoms. Personally, I can live with symtoms- what I cant live with is progression! On that note, Ill stick with my Rebif until something else comes out...
Hugs to you BG.
Nikki
It really stinks that we have gotten cynical enough to realize that this is BEYOND Cynical and in fact is probably true.
LDN always sounded, in theory like a great possiblity. I wrote posts 5 months ago looking into it, asking how to get it. However, after spending WAY too much money (in your neck of the woods, the big city- remember Im only 45 minutes outside of NYC) I learned that this is an effort not worth pursuing. Too many people agree that this isnt going to work for MS in the long term; however, no one has ever said it wasnt of great use to elminate symtoms. Personally, I can live with symtoms- what I cant live with is progression! On that note, Ill stick with my Rebif until something else comes out...
Hugs to you BG.
Nikki
duttin
06-02-2007, 10:08 PM
The Cleveland clinic done a study on LDN and it was extensive they ran it for about 7 years and the FDA would not aprove this med.
The clinic is to restart there trials again.
I gave a lot of my info on LDN to my GP and my electro-musclar Dr and they said they would do further research and if they found the research to be effective they'd have no problem prescribing it.
But now I need to get my neuro to switch me to copaxone as its the only disease modifing med that can be used with LDN.
I talked to MS lines and explained that I was having some side effects from rebif,the injection sites get real itchy afterwards plus if I inject on my right side stomache I get hard nodules under the skin.So they are to contact my neuro.
I see my GP this week.
The clinic is to restart there trials again.
I gave a lot of my info on LDN to my GP and my electro-musclar Dr and they said they would do further research and if they found the research to be effective they'd have no problem prescribing it.
But now I need to get my neuro to switch me to copaxone as its the only disease modifing med that can be used with LDN.
I talked to MS lines and explained that I was having some side effects from rebif,the injection sites get real itchy afterwards plus if I inject on my right side stomache I get hard nodules under the skin.So they are to contact my neuro.
I see my GP this week.
lilc
06-02-2007, 11:09 PM
This is sort of the "nutshell" version of what I understand.
Naltrexone, at a much higher dosage, is given to alcoholics as a deterrent - it apparently kills the possibility of getting a buzz (or blotto?) from alcohol.
I don't remember exactly how someone started looking at it in a very low dosage in relation to immune system disease, but I do remember it being looked at for AIDS patients.
Apparently they found that a low dose at a specific time of day (in relation to the person's sleep schedule) boosted(?) the immune system during a window of time where it was a good thing. The way I understand it, it makes the immune system "smarter" so that it doesn't attack us. I even recall reading that they started at higher dosages and kept "tweaking" it downward from something like (this is from memory, so could be way off) 20-50mg to 4-8mg. So a drug that IS approved, at a much higher dosage, for something else altogether has been through the R&D process, approvals etc in a manner that was probably (fiscally) fine for the pharmacutical company(s).
The only way to GET it at the low dose is to have a pharmacy prepare it for you. The doctor who is really promoting LDN is in NYC and I believe there are a couple of pharmacies in NYC ("coumpounding pharmacies" - I think that' what they're called) that that will do it. There are also at least a couple of Aussies on the board who are or have used it. Haven't heard anything bad from anyone who has used it.
The most common speculation I've seen about why it isn't in trials for MS (or AIDS) is the theory that it is just too cheap. That may well be true, since the cost of the R&D for the higher dose was probably recovered many years ago and now the drug is out there, and cheap for our purposes.
My neuro said "no" because she says I don't need Naltrexone. She's referring to the approved application.
I'm willing to be a guinea pig, frankly. Naltrexone, even at the higher dosage, doesn't seem to have many risks. At a tiny fraction of the dosage any risks would seem to be even lower.
It is true that it can't be used in conjunction with the interferons as they are immunosupressants and LDN (theoretically) strengthens the immune system. Copaxone is the exception, though the stories I've read make it seem like it works just as well without a disease modifying drug.
Hmmm, this is a pretty big nutshell, sorry!
Naltrexone, at a much higher dosage, is given to alcoholics as a deterrent - it apparently kills the possibility of getting a buzz (or blotto?) from alcohol.
I don't remember exactly how someone started looking at it in a very low dosage in relation to immune system disease, but I do remember it being looked at for AIDS patients.
Apparently they found that a low dose at a specific time of day (in relation to the person's sleep schedule) boosted(?) the immune system during a window of time where it was a good thing. The way I understand it, it makes the immune system "smarter" so that it doesn't attack us. I even recall reading that they started at higher dosages and kept "tweaking" it downward from something like (this is from memory, so could be way off) 20-50mg to 4-8mg. So a drug that IS approved, at a much higher dosage, for something else altogether has been through the R&D process, approvals etc in a manner that was probably (fiscally) fine for the pharmacutical company(s).
The only way to GET it at the low dose is to have a pharmacy prepare it for you. The doctor who is really promoting LDN is in NYC and I believe there are a couple of pharmacies in NYC ("coumpounding pharmacies" - I think that' what they're called) that that will do it. There are also at least a couple of Aussies on the board who are or have used it. Haven't heard anything bad from anyone who has used it.
The most common speculation I've seen about why it isn't in trials for MS (or AIDS) is the theory that it is just too cheap. That may well be true, since the cost of the R&D for the higher dose was probably recovered many years ago and now the drug is out there, and cheap for our purposes.
My neuro said "no" because she says I don't need Naltrexone. She's referring to the approved application.
I'm willing to be a guinea pig, frankly. Naltrexone, even at the higher dosage, doesn't seem to have many risks. At a tiny fraction of the dosage any risks would seem to be even lower.
It is true that it can't be used in conjunction with the interferons as they are immunosupressants and LDN (theoretically) strengthens the immune system. Copaxone is the exception, though the stories I've read make it seem like it works just as well without a disease modifying drug.
Hmmm, this is a pretty big nutshell, sorry!
Bearygood
06-03-2007, 11:34 AM
lilc, good nutshell.
Nikki, most of what I've seen claims to stop the progression, not just the symptoms.
nuffs, do you know the results of the Cleveland study?
FYI, I think that an LDN study in San Francisco is presently recruiting if anyone wants to check that out.
Nikki, most of what I've seen claims to stop the progression, not just the symptoms.
nuffs, do you know the results of the Cleveland study?
FYI, I think that an LDN study in San Francisco is presently recruiting if anyone wants to check that out.
duttin
06-04-2007, 12:06 AM
The results of the first study were great,but FDA wouldn't approve this med for MS.
Think 1700.00 a a month vs 20.00
Hopefully this up coming study will be productive.
Think 1700.00 a a month vs 20.00
Hopefully this up coming study will be productive.
lilc
06-04-2007, 12:11 AM
I forgot to mention in the previous "nutshell", it seems to increase energy.
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06-04-2007, 10:21 AM
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