Does you need to take LDN at 4.5 to have any benefit?

[anniekim]

About two years ago I was on LDN, got up to 3.5 mg, stayed on that for a few months, no benefits so I stopped. Someone said I should take up to 4.5 mg before I can say there is no benefit, any thoughts would be most appreciated. Thanks in advance

 

[Seven7]

I definitely raised NK after going up to 4.5mg BUT it was not easy. when I started LDN I would feel sleepy in the brain and I would sleep for hours. So it took me maybe 3 years to be able to go to that dose? I definitely have seen a huge difference since going up. Not much when I before that. But if you stop and it does something you will notice. Make sure if you quit for a bit to try not to change anything else at the same time. You will get the answer for your body.

 

[minkeygirl]

I've been taking 3 mgs and I think it's helping my sleep. I take it in the morning because when I took even the tiniest amount at night I was up all night.

 

[LaurelW]

I started LDN two months ago. I was on 4.5 from the get-go. I experienced sleepiness, insomnia and bad brain fog for the first week, then I was fine. I think the LDN gives me more stamina and I seem to recover from PEM faster.

 

[ahmo]

I started w/ very small amounts, worked up to 3mg. I stayed there some months, found significantly increased stamina. Eventually over another month or two, up to 4.5, but body prefers staying at 4mg.

 

[helen1]

You might want to check the LDN facebook group and read their experiences
https://www.facebook.com/groups/LDNRT/

I've been on it for 6 weeks, starting with .5 mg in the morning to see if it affected my sleep, which it didn't so I started taking it at night and am now up to 3.5 with only positive effects: better sleep, more endurance, no shaky legs, so far no PEM.

 

[Sidereal]

I'm seeing benefits at 0.5 mg but it seems I have to take it in the mornings or else I can't sleep AT ALL.

 

[CantThink]

Like Inester7 I had a bad reaction/experience every time I upped my dose - like a herx. Yet once my body got used to it, I had benefits similar to everyone else mentioned - better sleep, more stamina and so on. In the end I had to come off it to have surgery and I felt it had stopped working so I wanted to see what happened. I will retake it soon (end of March) and hope my body reacts well and I get benefits again. It was the most effective treatment I've done M.E-wise.

I think it is worth trying the max dose to see if you get any benefits.

 

[Sidereal]

Like Inester7 I had a bad reaction/experience every time I upped my dose - like a herx. Yet once my body got used to it, I had benefits similar to everyone else mentioned - better sleep, more stamina and so on. In the end I had to come off it to have surgery and I felt it had stopped working so I wanted to see what happened. I will retake it soon (end of March) and hope my body reacts well and I get benefits again. It was the most effective treatment I've done M.E-wise.

I think it is worth trying the max dose to see if you get any benefits.

I get viral symptoms every time I up the dose but without a question it's been the most effective treatment for ME/CFS I've tried so far. With regard to it seemingly not working anymore, I get this impression every so often. I've discovered that if I skip a day or two and re-start at the same dose it starts working again. I don't understand the underlying mechanism of why this happens. It's as though it builds up in my system too much. I'm a very slow metaboliser of drugs in general.

 

[CantThink]

I get viral symptoms every time I up the dose but without a question it's been the most effective treatment for ME/CFS I've tried so far. With regard to it seemingly not working anymore, I get this impression every so often. I've discovered that if I skip a day or two and re-start at the same dose it starts working again. I don't understand the underlying mechanism of why this happens. It's as though it builds up in my system too much. I'm a very slow metaboliser of drugs in general.

Thanks for the tip! That's really helpful as I was experiencing it stopping working and increasing until I hit 4.5, then I had no more increases.

 

[daisybell]

I found it worked very well at 4.5mg for several months. Since then I have gone backwards. I tried taking it twice a day, and am now trying a double dose in the mornings... Next step is to stop for a few days and restart. I hope I can get the initial response again.....

 

[CantThink]

It's interesting that I'm not the only one who's had great benefit, but also experienced ceasing to get the same benefits after a certain period of time.

 

[SOC]

We had unpleasant (but far from unbearable) symptoms briefly every time we increased dose until 3.0 mg. After that we had no problems increasing dose by 0.5 mg weekly until we got up to 4.5 mg. We are not particularly sensitive to meds, so that increase rate may be too much for people who are.

We started noticing positive effects at about 3.0 mg, but we seem to be doing better at 4.5 mg. So for us, full dose (4.5 mg) is best. That could be a very individual thing, though.

So far we have not experienced it ceasing to work, but we are also taking Valcyte atm, which has some affect on microglia, so that could be masking any variation in the effect of LDN.

 

[Gondwanaland]

LDN is an immunomodulator; should it be pulsed?