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laymans' terms anyone plz?

hiya, have been trying to read up on LDN on these boards today. I am finding it really hard to read through all of the information and make sense of it all. does anyone know anything about this drug and could you explain it to me in a simple, almost bullet point format style plz? i don’t fare very well at present with huge amounts of data and find it really hard when all the text is crammed into one paragraph. so would appreciate all or any help given with this. i am looking for answers on things such as: 1. how far away is NICE from saying it is ok and effective to use? 2. does the ms society have any actual factual data on the uses and results in people with LDN? after all word of mouth is always good to know but it is reassuring to have these meds tested etc too. ty in advance for any replies given. tc Anna x

I’ll do my best. Naltraxone is available on NHS prescription,it is used to help adicts get off/stay off drugs. It’s usually prescribed at 50mg or higher. When taken at a lower dose,hence the name Low Dose Naltraxone,some people with MS ( amongest other diseases ) find their symptoms improving.Some with RRMS find it reduces the number and serverity of replapses. As Naltraxone is out of patent,there is no money at all to be made from it,therefore no drug company is willing to trial it on MS patients. There are a number of drugs regulary prescribed for pwMS,including Pregablin and Amatrypaline that have not been trialed for MS. I’m not sure the Society holds any data on LDN but the LDN Research Trust will be able to help you. Speaking personally it has made a huge difference to my bladder and cognative function,I have had relapses though,it’s not somekind of miracle cure but I never expected it to be. :smiley: I hope that helps,good luck,xxjo

sunspirits wrote:

i am looking for answers on things such as: 1. how far away is NICE from saying it is ok and effective to use? 2. does the ms society have any actual factual data on the uses and results in people with LDN? after all word of mouth is always good to know but it is reassuring to have these meds tested etc too.

My answers would be: 1. Very far away. 2. The MSS has access to all the research papers that have been published about LDN and MS. As far as I know they have never funded a study of LDN themselves. The reason for the answer to 1 is that NICE bases its recommendations on research results and there have been very few proper research studies of MS & LDN in humans. The studies that have been published are small and don’t have the best of design so their results are less convincing to scientists (and NICE). However, they show that people taking LDN feel their “quality of life” has improved (i.e. they feel better) and that some PPMSers had slower progression and improved spasticity in the six months they were taking LDN for the study. Other symptoms don’t seem to have been studied. Given the lack of published evidence, I think that the only way that NICE would approve LDN as a treatment for MS would be for there to be a proper clinical trial that showed LDN significantly and positively influenced MS / MS symptoms. But, a proper clinical trial would cost millions of pounds. Because LDN is not possible to patent, whoever pays for the trial would not get their money back from sales, so drug companies will never pay for a trial. The NHS and some charities fund research projects, but it would be a substantial amount out of their budgets so it would be difficult to get the money. It would be possible to do smaller studies of course, but they would have to be really excellent to persuade NICE to approve LDN for the treatment of MS. A quick point on the use of some drugs that haven’t been specificially tested for MS: established drugs don’t have to go through the same trial process. This is because they are already known to be safe and their side effects and dosage levels are known. I hope this wasn’t too hard to follow? If it helps, lots of people use LDN. Some find it helps with their symptoms. Some don’t. Some find it helps with their progression. Some don’t. It seems safe to use. It is relatively cheap. Why not try it? Nothing ventured, nothing gained… Karen x