Forum

LDN, ANY THOUGHTS?

Oh i just spewed up a massive rant about my current problems with regards to MS but it didn’t post for some reason. Probably a good thing, for you guys! Anyway, to cut a long story short. DMD’s (3) have not worked for me and have been tolerated very poorly, to say the least. Any thoughts on LDN? I keep hearing anecdotal evidence that it is a wonder drug but there are no large scale studies into its affectivity. Not much else for me to try and i’ve got nothing to lose…

Kate

Hi Kate

LDN has been controversial on these forums in the past.

It is not a substitute for DMDs and will not slow progression.

However, some people find it really helps with their symptoms, others find that it hasn’t made any difference at best.

Good Luck

Anne x

I tried and was pleased with the effects on my bowels and bladder especially.

But I could not sleep.

I changed to a morning dose, but still could not sleep.

I wasn’t properly asleep when I was, just felt like I was in a suspended half dream state!!

I stopped taking it and have returned back to more usual sleeping patterns, I miss it’s more positive effects on my ‘movements’ and moods but couldn’t deal with the not sleeping x for some luck beggars it make them feel sleepy!! Would of loved that!!

I wish I could tolerate it, I even tried lower doses but the same issue prevailed x

I think it’s definitely worth a shot!! Good luck

stacey x

Agree with AnnieB.

There is some evidence it is mood-lifting, and may help some people with some symptoms.

There is no evidence it’s an effective substitute for DMDs - I don’t personally think they’re in the same niche at all - and I have absolutely no axe to grind with respect to DMDs, as I declined them, but am still doing very well (touch wood). So I’m not someone who has strong feelings that you’ve got to be on DMDs. I just think that whatever your choice, it should be with accurate information, and the suggestion LDN is in any way on a par with DMDs is misleading. That doesn’t mean you might not find it useful in other ways.

As I understand it, you can’t combine it with opioids such as anything containing codeine (just in case you were already using those for pain relief), although I seem to remember somebody posting something recently suggesting it might be OK as long as you were very organised about the spacing of the doses, always ensuring sufficient separation.

But that’s obviously something you’d have to look into further if you wanted to try it, but already use opioids. It might not be an outright no, but they’re not really compatible, so precautions would be necessary.

Tina

l have been taking LDN for about 6yrs. For me it is brilliant. No brain fog - more energy - as it boosts your endorphins. And it is safe to take alongside DMDs. l have had PPMS for 33yrs - so have never taken DMD’s. LDN is not a DMD - but it does help you cope with MS symptoms. And my MS has not progressed since taking it. Wish l had known about it many years ago. lt certainly makes you feel more positive - confident- a mood lifter.

lf you need to take codeine - you can time it so that it does not coincide with your LDN. And take the LDN early evening so that it does not interfere with your sleep. l had to stop taking it when l had a knee replacement op - because l was on so much codeine/morphine. And l really noticed the difference. Started feeling very lethargic and depressed.

Thanks for your responses everyone. If i CAN take it alongside Gilenya, maybe i will do that although unfortunately the Gilenya doesn’t currently appear to be working very well for me but the idea of being DMD free scares me a bit. I’ve bought into that! I don’t take Codeine as it makes me vomit so that’s not a consideration thankfully. And mood lifting sounds good! Hopefully my neurologist will share my enthusiasm for this new venture!