Spoke to a friend yesterday whose cousin is on LDN for her MS and seems to be doing well. Has anyone here taken this drug or know anything about it?
LDN is low dose naltrexone - a low dose of the drug naltrexone that is used with addicts. It changes the levels of endorphins in the brain.
MS & LDN is controversial. Some people swear by it. Some people say it does nothing for them or makes them worse. Some people say it’s helped some of their symptoms.
There have never been any proper trials of LDN so it’s not possible to say what it actually does for MS, if anything. All the evidence is anecdotal and uncontrolled (i.e. people are on all sorts and do all sorts of things while they also take LDN, plus MS is completely unpredictable and so any supposed effect of LDN could be complete coincidence or just a placebo effect) and people who don’t have a good result don’t tend to post about it on-line so there is a bias towards those who love it.
Like any drug, some people can get side effects, but LDN seems to be generally safe. There are people who take it as well as a DMD so it is seems safe to combine them.
Because there have been no trials, LDN is not approved by NICE for anything and so most GPs will not prescribe it. You can get private prescriptions however.
If I had SPMS or PPMS and couldn’t get on a trial for a DMD, then I would definitely try it because there is nothing else for progressive MS at the moment.
For now, I’m still RRMS and I’m happy on Rebif alone.
Karen x