Question about LDN and DMDs

[Artanis12]

OK, I know LDN comes up from time to time, but this time may be a bit different.

I was diagnosed with fibromyalgia several years ago. After my mother died (of ALS no less) I realized I was a wreck - exhausted, hurt all over, felt like I had the flu all the time.  Long story short, after trying several of the pain meds they give for fibro these days - Cymbalta, etc -  and had them give me some weird side effects, I suggested to my rheumatologist, that there had been a pilot study of LDN, it had low side effects in that study, and would he let me try it.  He did, I found a compounding pharmacy, and have since been on it. It really seemed to help with the pain and energy, both of which were improved to manageable levels for most of the time I've been on it - about 5 years now?  I seem to have an increased pain level in the last year or so, but I'm older, and who knows, it may have been the MS starting to skew the picture.

And just for the record, I had ZERO idea that LDN had now made it to reviled snake oil status. I found this back in 2010 (as I recall) and I knew it was off-label and maybe going to be placebo, but as I said, it couldn't hurt, and since fibro seems to be mainly a pain syndrome with no clear disease progression like MS, I figured anything that might moderate perception of pain could only be a good thing, especially if it was not ridiculously expensive and had low side effects.

If you want to see what sent me down the LDN path, watch this video from the Stanford Neuroimaging And Pain Lab. I found it kinda by accident, but found it very interesting.

Go to about the 42 minute mark and watch from there to skip the parts about fibro and just watch the part about LDN....complete with caveats to NOT get too excited, etc. This is NOT a plug for LDN, I promise.
https://www.youtube.com/watch?v=jtc2JARVpPw

Which brings me to my actual question. I've read somewhere around here that LDN may boost immune response? Could anyone here elaborate or clarify that?  I have just started taking Tec, and I'm a bit concerned that the LDN could interfere in some way with it. I would not want to have competing meds- one boosing my immune system and the other depressing it. And for the record, I do NOT think that LDN is in any way effective for MS (or at least I've not read anything convincing to that effect) but I HAVE experienced pain reduction while using it, and I've noticed (like right now) that when I stop taking it, my pain level creeps back up - today I feel vile and like I've been beaten and someone tried to yank my shoulders out of their sockets. In short, just like I did before I started taking the LDN.

So I'm really trying to decide if I want to go through the thrash of continuing to get a script for the LDN, which I pay for out of pocket. Quite frankly, I dislike this rheum, and would just as soon consolidate doctors and not have to deal with him, but he has never pushed hard to get me to take too much stuff like Lyrica and let me do the LDN. Most doctors - especially neuros - seem to think it's bunk, but then they are likely dismissing it for professional image, and thinking of the snake oil hype and desperate MS patients who are looking for something to make their MS better, when I'm just looking at it for a bit of non-side-effect-laden pain relief. But when I mentioned it to my neuro, he predictably rolled his eyes and dismissed it out of hand and told me to go back to the rheum. He has given me Nortriptyline(to help with sleep) and Naprosyn(headaches) for pain, but I'm not currently impressed with either, since as I said, I feel quite vile...

Any comments and perspectives appreciated.

[HVAC]

What LDN does is boost Seratonin when you sleep That is why people feel so much better. If it works great. I just want people to be educated if they choose it over a DMD. In that case it is not the same. When I went off my DMD I was well educated as to the risks. I did not do it lightly. I take full responsibility for loss of mobility or blindness or the progression of MS. I did not ever try LDN. I am dubious of anything that helps so many ailments. Like the Far side Cartoon with the horse. Broken leg shoot it, ..... shoot it, Bad breath shoot it. I have heard people who could not take DMDs rave over it. I am a born skeptic.

Alex

[Artanis12]

Well, I never got a NO from the neuro, and he already knows everything I am taking from some other doc (remember, he rolled his eyes rather than saying "don't").  And I spoke with my insurance's specialty pharmacy nurse last week and they know I'm on it (NOT taking it was recent and my choice not mandated by any medical authority) and no one said anything about drug interactions and I know she was thinking of them because we did discuss extensively what I might be taking if I had nausea as a side effect. In any case, I'm not entirely sure how many interactions they would know of at this point, since Tec has not been on the market very long. There's a whole bunch of drugs out there after all.

I saw the "boost the immune system" claim somewhere on this site.  Don't ask me where - it was likely at 2am when I couldn't sleep from the pain. I just remember someone here coming in and taking issue with the phrasing and qualifying it, hence my question for clarification, since I don't recall what the clarification about immune response was. I guess I will try to slog back through and see if I can find it again.

[immisceo]

Your doctors or pharmacists should be able to advise you about drug interactions. I'm wondering where you saw the 'boost the immune system' claim however. This is a medically meaningless phrase and would be unlikely used in a reputable, reliable source.

Some of the research trying to nail down if LDN may benefit MS patients points to potential anti-inflammatory properties. As inflammation is an immune response, one of the perspectives must be wrong. It can not both reduce inflammation *and* cause an over-active immune response (what might be meant by 'boosting the immune system'). This is scientifically impossible.

I'm very sorry you feel so poorly at present. Finding the right mix of treatments for both disease and symptoms can be a bit of delicate, on-going dance. If you do choose to take both LDN and Tecfidera, just make sure you get the okay on the drug interaction front and inform all of your medical team.