I'm coming off my LDN

I was told by my neurologist when I saw him in August of last year, I was suffering with a relapse he came to that conclution after an MRI with contrast, there were some new lesions lighting up on my brain, so he looked through my hospital notes, found two occations he said were relapses, mmm I remember saying I think I’m still be relapsing which always said no you dont have relapses only progression as he could see 2 relapses in two years so since October I have been on my copaxone, I had a relapse a few weeks ago thankfully it has fizzled itself out very quickly,

so I’ve decided to come off my LDN, as personally for me I’ve still been relapsing while I’ve been on it, thats the main reason I was taking it to stop the progression I’ve given it a good long time, I’ve been on it since April 2010, its not as if I stopped taking it after a week or a couple of months, I have been dropping it by 1ml each week, so next week I will be off it completely.

Al x

Hi, sounds like probably the right thing to do for you.

My experience of LDN lasted about 6 months.

At first it helped my weak bladder and reduced spasticity. But it disturbed my sleep big time.

I persevered cos of the good benefits.

But the sleeping problems never went away. Then the old symptoms returned so I stopped taking LDN.

luv POllx

How do you know LDN isn’t helping? Perhaps it is slowing progression.

I’m primary progressive and have been taking 2mg LDN since diagnosis 8 years ago. It almost immediately solved my bladder problems. I have run out occasionally, and leg pain, bladder problems and brain fog quickly return.


Like John - l have been taking LDN for a few years - l take 4.5ml daily - l have had SPMS for 30yrs - and since being on ldn l have not progressed - no brain fog - far less fatigue - feel more positive - which helps coping with disabilities.


Hi there,

From what I’ve been told, from the LDN Trust and some knowledgeable folks here, the LDN only stays in your system for 4 hours, so you could just stop it right now if you wanted to.

You’d have to if you were having an operation or something that involves opiates, so it must be safe to do so.

I take it for symptom relief. It has helped with that - the good news being that if you discovered that the LDN was helping with some symptoms, then you can still take it with Copaxone - or any of the other older drugs, like I do with Rebif.

I have a theory that it works differently with PPMS. It may well slow down progression, but unfortunately there’s only anecdotal evidence for that.

I hope you stop relapsing soon.

best wishes,