Aa
I said that to my gp, "I'm happy to be the benefit of placebo effect! Whatever works!" However I've been struggling to find the optimum dose for a while -- I'm pretty sure it's actually the med working at this point.
The serotonin effect is one thing, however it is now considered an anti-inflammatory as well.
The serotonin effect is one thing, however it is now considered an anti-inflammatory as well.
It doe nothing for MS per say. What it does is boost Seritonin in the brain making you feel better. It can't be used with any narcotics. Many neurologists will not prescribe it. Some people swear by it. If it makes you feel better I say go for it.
Alex
Alex
I have taken it for several years for fibromyalgia pain. Like aspentoo, I didn't do so well on Cymbalta, and I'd seen a presentation on fibro by a doctor at the Stanford Neuroimaging And Pain Lab, where a small trial was was discussed. Like her, I too figured it could not hurt, and asked my rheum about it. He was OK with me trying it and prescribed it for me. For me it seems to work on pain level.
Do I realize that it could be placebo? Yes. Do I care? No. If it was purported to do anything but moderate pain perception, I would be (and am), very skeptical. But since all pain is self-report, I don't see that drugs like Cymbalta should be any more "real" than naltrexone. If I can get pain relief without the zombiehood that comes with the Cymbaltas, etc, and get on with my (so-called) life, I'm all for it.
Now, do I think it's any good for MS? Doubt it. I just happened to be on it for fibro. I would not consider it as a serious contender for a med purported to moderate MS.
Karen
Do I realize that it could be placebo? Yes. Do I care? No. If it was purported to do anything but moderate pain perception, I would be (and am), very skeptical. But since all pain is self-report, I don't see that drugs like Cymbalta should be any more "real" than naltrexone. If I can get pain relief without the zombiehood that comes with the Cymbaltas, etc, and get on with my (so-called) life, I'm all for it.
Now, do I think it's any good for MS? Doubt it. I just happened to be on it for fibro. I would not consider it as a serious contender for a med purported to moderate MS.
Karen
I am only providing anecdotal information, as requested by YayaMommie. Plus I linked an article I found scientifically sound. You should take a look -- it's interesting. Again, I'm not convinced it will do anything for ms (and I agree with you -- that research has not
yet been done. The only real trials thus far seem to be with fibromyalgia).
When I first saw that huge list of things LDN supposedly treats, my scientific hackles were raised as well. However, that does not mean it is useless and should be avoided.
With respect to pain -- mainstream pain clinics in our neck of the woods are using it routinely at this point.
Many medications are used off-label -- in particular pain meds (cymbalta, amitriptyline, gabapentin etc. were all originally designed for something else). Please don't discount it altogether because of the hoopla and some
of the inaccuracies at that site. I would hate folks who "might" (no guarantees) be helped by the med, shy away from LDN. I am a zombie on traditional pain meds -- I can function with this.
Just my opinion.
yet been done. The only real trials thus far seem to be with fibromyalgia).
When I first saw that huge list of things LDN supposedly treats, my scientific hackles were raised as well. However, that does not mean it is useless and should be avoided.
With respect to pain -- mainstream pain clinics in our neck of the woods are using it routinely at this point.
Many medications are used off-label -- in particular pain meds (cymbalta, amitriptyline, gabapentin etc. were all originally designed for something else). Please don't discount it altogether because of the hoopla and some
of the inaccuracies at that site. I would hate folks who "might" (no guarantees) be helped by the med, shy away from LDN. I am a zombie on traditional pain meds -- I can function with this.
Just my opinion.
There is a lot on the LDN Research Trust website that sends up red flags, regardless of the legitimate-sounding name. Using self-reported anecdotes as proof that something works, then creating trials to prove that is so, that is not science.
"The Charity was set up by a group of people who themselves have MS and who have proved that LDN works for them." Well, no they haven't. The trials for condition-specific results on LDN and even what those results might be have not taken place or finished yet.
To have the end result in mind already before going after the real proof and asking for donations in order to generate the foregone conclusion is very worrisome, and I personally feel very protective of those of us with MS and the various too-good-to-be-true things we're presented with on the regular.
Linking to 400 interviews and a random list of over 100 disparate conditions as they do on this site in lieu of evidence is also not terribly professional. So is referring to HIV/AIDS as an 'auto-immune disease'. (as happens on their site) What?! It's basically the opposite!
It's likely these people mean well, but they seem more like enthusiastic 'true-believers' than MS advocates.
"The Charity was set up by a group of people who themselves have MS and who have proved that LDN works for them." Well, no they haven't. The trials for condition-specific results on LDN and even what those results might be have not taken place or finished yet.
To have the end result in mind already before going after the real proof and asking for donations in order to generate the foregone conclusion is very worrisome, and I personally feel very protective of those of us with MS and the various too-good-to-be-true things we're presented with on the regular.
Linking to 400 interviews and a random list of over 100 disparate conditions as they do on this site in lieu of evidence is also not terribly professional. So is referring to HIV/AIDS as an 'auto-immune disease'. (as happens on their site) What?! It's basically the opposite!
It's likely these people mean well, but they seem more like enthusiastic 'true-believers' than MS advocates.
I'm taking LDN. I figured it couldn't hurt to try it ... Since I'm in limbo and I am not being treated, I wanted to be pro-active in some way.
I was not optimistic: it doesn't help everyone. I figured my chances were 50:50. I am taking it for pain and inflammation- hoping it would work for the inflammation my neuro says I have in my brain ;).
This is the article I gave to my gp:
http://link.springer.com/article/10.1007%2Fs10067-014-2517-2
I've been taking it since May 1. I'm off all my other symptom meds now. Even at the lowest dose I took, it improved my mood. It also helps pain and fatigue. It may also be helping quite a bit with my over-active bladder, WITHOUT causing retention (this could be a fluke though -- I might have been improving in this area already).
I highly recommend the liquid form to start. If I had stayed at the standard dosing schedule I was given (1.5, 3 then 4.5 Mg/day) it would not have worked for me -- it's very specifc to each person. My "sweet spot" is 3.6-3.7
Mg/day. It took some (very frustrating!) time to figure this out.
I do have two side effects but compared to the lyrica/gabapentin/cymbalta etc. I've been on, they are manageable. I get complete pain control at 4 mg --
But that comes with both insomnia and and a huge increase in spasticity of my weak side. At the level I'm taking, pain control is good at night and dulled later in the day but I can get out of bed in the morning.
At the LDN research trust site, it is recommended that ms patients take lower than 3 mg rather than up to 4.5 mg daily because of increased spasticity.
Sorry I wrote a novel ... But wanted to convey that it's not
A miracle drug (pretty sure I wouldn't dump DMTs to take it as some are doing) however there is a possibility it will help with symptom relief.
It's not covered by insurance for the most part, however it's cheaper than most newer medications so I believe it's worth a try. Plus it seems to multi-task -- i have another situation which it may be helping. If it is, I'll know later in September and will update here (if I remember lol --
It doesn't seemBro help memory, sadly ;).
FYI :).
I was not optimistic: it doesn't help everyone. I figured my chances were 50:50. I am taking it for pain and inflammation- hoping it would work for the inflammation my neuro says I have in my brain ;).
This is the article I gave to my gp:
http://link.springer.com/article/10.1007%2Fs10067-014-2517-2
I've been taking it since May 1. I'm off all my other symptom meds now. Even at the lowest dose I took, it improved my mood. It also helps pain and fatigue. It may also be helping quite a bit with my over-active bladder, WITHOUT causing retention (this could be a fluke though -- I might have been improving in this area already).
I highly recommend the liquid form to start. If I had stayed at the standard dosing schedule I was given (1.5, 3 then 4.5 Mg/day) it would not have worked for me -- it's very specifc to each person. My "sweet spot" is 3.6-3.7
Mg/day. It took some (very frustrating!) time to figure this out.
I do have two side effects but compared to the lyrica/gabapentin/cymbalta etc. I've been on, they are manageable. I get complete pain control at 4 mg --
But that comes with both insomnia and and a huge increase in spasticity of my weak side. At the level I'm taking, pain control is good at night and dulled later in the day but I can get out of bed in the morning.
At the LDN research trust site, it is recommended that ms patients take lower than 3 mg rather than up to 4.5 mg daily because of increased spasticity.
Sorry I wrote a novel ... But wanted to convey that it's not
A miracle drug (pretty sure I wouldn't dump DMTs to take it as some are doing) however there is a possibility it will help with symptom relief.
It's not covered by insurance for the most part, however it's cheaper than most newer medications so I believe it's worth a try. Plus it seems to multi-task -- i have another situation which it may be helping. If it is, I'll know later in September and will update here (if I remember lol --
It doesn't seemBro help memory, sadly ;).
FYI :).
(links to sites outside of medhelp have to be cut&pasted into your browser. Simply clicking it won't work)
Many people have, though there doesn't seem to be a lot of evidence of its efficacy. Typically when it's brought up in the context of MS, it's termed LDN (low dose naltrexone). Doing a search of this site gets you these previous mentions. http://www.medhelp.org/search?utf8=%26%23x2713%3B&query=ldn&camp=top_nav_search
This is an older (2010) article that gives an unbiased overview. https://www.sciencebasedmedicine.org/low-dose-naltrexone-bogus-or-cutting-edge-science/
This is an older (2010) article that gives an unbiased overview. https://www.sciencebasedmedicine.org/low-dose-naltrexone-bogus-or-cutting-edge-science/
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