Low Dose Naltrexone - LDN

Everyday living
1

Hello, I’m new to this but looking at some of the posts it seems lots of people out here in cyber world are overcoming the challenges that MS sets us daily. I’ve found reassurance that I’m not the only person who thought ‘I was losing the plot’ or being passed from pillar to post in various hospital departments.

After years of being told by gp’s & hospitals I had restless leg sydrome, in 2004 a Rheumatologist diagnosed Fibromyalgia. The poor concentration & bad memory was explained as ‘brain fog’ of Fibro plus getting older (52). The inflammation shown in the MRI scan in 2005 was forwarded to a Neuro but ignored completely .

In the past 3 years: A Urologist arranged for me to have an OPERATION for constant bladder weakness, a kidney specialist arranged a Lithotripsy procedure for calcium build up, a Rheumatologist did a lip biopsy (suspecting my dry eyes was sjrogens) For over 35 years I’ve had excruciating pain in my right hip and down my right leg, I’d even described it as neuralgia type toothache in my leg. Painkilling meds varied from Co-codamol, Tramadol and, eventually, Buprenorphine. I also took 3 x 25mg Amitriptyline every night.

Only by chance did I have another MRI scan in Feb 2011 and in November 2011 a registrar confirmed MS. The Neuro consultant was contacted and, would you believe it, he still didn’t contact or see me and ignorned my file! Two months later the DVLA revoked my driving licence based on the consultant (who I’ve never even seen) comments.

Last year I changed doctors and hospitals because of their constant cancellations, errors & omissions. At the new hospital, my MS Nurse explained I should STOP taking the morphine based painkillers & also STOP Amitriptyline. She recommended Gabapentin and I have been virtually pain free ever since. Of course there are lots of other symptoms too and I think fatigue is the worst.

However, over the past few months I’ve noticed a lot of changes within myself - I can’t walk in a straight line, my balance is a lot worse, my eyesight is dreadful, I’m not quite ‘with it’ and do the oddest things such as forget I’m cooking something in the oven until the smell of burning food emits the house. I can hold a seemingly intelligent conversation but forget within seconds the topic or who has said what. I can’t seem to motivate myself and, left to me, I’d sit in my dressing gown all day & eat a simple ready meal or skip food altogether. This could go on for days on end. Yet if someone is coming to visit me or to take me out shopping, I’m able to get myself dressed and ready, make up on & hair/nails looking ok.

I read about LDN and that monitoring has given surprisingly good results, almost to the point of no symptoms! It’s been licenced in the UK for prescriptions and I asked my new neurologolgist if he thought LDN would benefit me but he doesn’t know anything about it! The new hospital is superb and very competent but I am concerned the Neuro didn’t know about LDN. He did say that he’d research it.

I wondered if anyone out there has heard of LDN and has any insight/advice/opinion.

Goodness me, sorry for chattering on and on…

2

Quite a few people on here use LDN, but there are a wide range of opinions on it. Some people swear by it, others say it does nothing / was bad for them and everyone else is in between or staying out of it!

The ldnresearchtrust website has lots of information on it - why not suggest your neuro have a look on there?

Btw, have you seen a neurophysio for help with your balance and walking? And an ophthalmologist about your eyes? Drugs aren’t always the best answer :slight_smile:

Karen x

3

Naltrexone is licenced for the treatment of opiate addiction is 50Mg pills, in the early 1980’s it was discovered that small doses of naltrexone could be used to treat pancreatic cancer. It was then initially used as a treatment for AIDS and was submitted to a small but successful clinical trial for this condition. However around all this time a coincidence occurred in that the doctor involved in the AIDS treatment had a daughter with a friend who had just been diagnosed with MS. He tried in on her with seeming success and it has really grown in use for MS from that time much more rapidly in recent years due to the internet.

There have in recent years been a few small clinical trials but they have not really added much to the evidence for MS in that the main evidence is the vast number of people taking it and the reports from the medical conferences here and in the US most of which you can listen to on line if you wish.

The problem is that naltrexone is a cheap out of patent drug so there is no commercial interest is testing it to licencing standards. So you have a readily available cheap treatment which many find effective at stopping or slowing disease progress which will never be tested and formally licenced for the treatment of anything. However most treatments routinely used to treat MS are not licenced for MS so this is not the big deal many would like to make out it is.

Low dose Naltrexone however is not a licenced medication, it is a non licenced preparation of a licenced medicine. It however is perfectly legal to prescribe in the UK by any doctor, some will some will not. Some PCT’s will allow it on the NHS some will not.

I would however be very concerned about a neurologist who has never heard of it, what planet has he been on? There is even an all party parliamentary group been formed to get it more readily available on the NHS.

http://www.ldnnow.co.uk/

It is a treatment you can try however even if your own doctors will not prescribe it if you are prepared to fund it yourself at about 50P per day plus prescribing costs. Many use Emed to get private prescriptions. However even if your PCT will not fund it your own GP can write private prescriptions, many will if presented with a well researched case.

4

LDN did help me with my bladder, but it didn’t alleviate all my MS symptoms and it didn’t prevent relapses. Unfortunately, it doesn’t do anything now and I’m going to stop it for a while to see if anything changes.

I had less spasticity and great bladder control - for over 3 years, but the problems with spasticity and an overactive bladder have slowly returned.

I wouldn’t expect your neuro to have a positive opinion - or even an opinion about LDN. There have been no proper trials yet, so it won’t show up in clinical research.

I live in Spain where LDN doesn’t even exist as a drug! I have to buy Naltrexone capsules and make my own LDN.

It’s up to you, whether to take it or not. You can take it safely with the older DMDs and there are a few people taking it with Tysabri.

LDN can give you some nasty side-effects. My mother was prescribed LDN for her ME and it gave her such awful diarrhoea that she became seriously dehydrated. My husband can’t take it either - he wanted to try it to see if it would help with his bowel inflammation. He’d had a near-fatal reaction to Venlafaxine and his liver almost stopped working - he was within 3 days of death. He tried 0.5 mgs of LDN and after 2 weeks had to stop. He looked and felt terrible.

It’s worth a try. E-med is the cheapest way to obtain it in the UK and I hope it works for you. It may really help you. I’d give it a try. I don’t regret having taken it - except for the time when I wasn’t on beta-interferon. I’d had to stop it as I’d run out after moving here. I believed the ‘hype’ and suffered as a result. I spent 2 weeks in hospital with a terrible relapse.

Later I restarted it and beta-interferon and my health and quality of life was much improved.

5

Well, Chrissie, you have had a couple of honest answers, and a bit of hype, so lets try for a few facts:

LDN is not out-of-patent. The guy (Dr Bihari) who discovered the effects of LDN patented the application of LDN for several auti-immune diseases. Those patents were bought last year (July/August) by TNI BioTech Inc.
TNI BioTech announced back in October last year that they were going to set up a Phase III clinical trial ot act as a precursor to getting LDN approved as an MS treatment. Since they are setting up a large plant in Central America to produce LDN, I think is is safe to assume that there is a serious commercial interest.

I can quite understand a neurologist claiming “not to have heard of LDN” in the absence of a successful clinical trial. I had a similar experience with FES. Two people - who could not refer me for it - had never heard of it. When my Neurologist referred me, they knew all about it.

The “all-party parliamentary group” was formed as a result of a so-called “debate” in which only a couple of real statements were made - one of which had some “information” on the costs of one particular DMD that was blatantly untrue. The information was supplied by the ldnnow pressure group, who subsequently blamed a typo, but have never corrrected it.

Listen to the people who have taken it themselves.

Geoff

6

My GP has been prescribing ldn on the NHS for nine years now and very grateful that she does. It has helped with most symptoms and significantly slowed down progression, which is pretty remarkable for PPMS.

However, improvement does vary according to individual and is by no means guaranteed, so it’s important to keep your expectations in check.

Take a look at the anecdotal information on www.ldnresearchtrust.org and see what you make of it.

7

That’s funny.

I have often wondered that about you myself, David

8

Thanks SO much folks, it’s all so new to me & will take my dulling brain some time to absorb your informative advice.

I’ve only been to the Manchester hospital twice & the neuro seems to be very thorough (but then the previous hospitial experience over 9 years was a total fiasco) so not much to compare to. The Manchester MS Nurse holds a clinic at Macclesfield hospital & I’ve seen her twice (forever grateful that she recommended Gabapentin for neuro pain).

It may be that I won’t be prescibed anything, because until Gabapentin last year, I haven’t taken anything specifically for MS. I’m going for a Contrasting MRI Scan on 27th January and then a follow up appt with the Neuro.

Thanks again folks,

9

HELP/ADVICE needed again if poss. I’m confused, frustrated and, to be honest, a bit scared that the specialists whom I depend on have conflicting views.

My neuro has written to me confirming he has asked a colleague who “has a special interest in MS” and has advised that the use of LDN is controversial as its efficacy has not been clearly established. Essentially it consists of a few poorly designed studies with conflicting results"

My neuro ends his letter with “As a result of these comments, I would therefore not recommend its use”.

He goes on to say that if I wish to, we can discuss this further at my next clinic appointment (June 2013).

10

Hi Chrissie

The jury really is out as far as LDN is concerned

The MS Society provides a useful summary of the current situation at:

http://www.mssociety.org.uk/ms-news-and-research/ms-research/potential-treatments/emerging-areas-of-research/ldn

I am not convinced by the arguments for it and have decided not to take it, however you may decide that you have nothing to lose and that it is worth a try.

Good Luck with whatever you decide to do

Anne

11

Chrissie,

l have had spms for 30yrs - and have been taking LDN for the last 5yrs. lts certainly not a cure - and nobody has said it is. But it certainly makes life easier - and helps you cope with ms symptoms - brain fog - bladder control - fatigue - muscle pain. Like Whammel - l have certainly not progressed since taking it - and as for me there are no other meds l can take. LDN boosts your endorphins - and gives you a ‘feel good’ more positive outlook.

l wish l had known about it years ago. lts only from folk on this site that l discovered ldn for myself. l have to get mine via e-med/Dicksons - although l have recently changed GP - so l might ask the new one if he will prescribe it. l do get Sativex on repeat prescription. As for your ‘neuro’ - l am not surprised that they knew nothing about ldn. The one l saw last year did not know anything about vitamin d3/vitb12.

l take it because it makes me feel brighter - more positive and more able to cope with all the other ms symptoms. Unlike many of the other meds that are dished out that have such bad side effects.

lt puts a smile on my face.

Fx

12

The reason that the efficacy has not been clearly demonstrated to the satisfaction of some people is that it has not been submitted sufficient clinical trials. One company seems to think there is a profit motive to explore as per the recent announcement below. However Naltrexone itself is now out of patent. A lot of work has been done on crohn’s disease so it is the most likelyfirst target rather than MS and phase 3 trial take a while anyway.

There are some patents for Low Dose Naltrexone in existence but they for the application of Naltrexone in a low dose form. http://www.lowdosenaltrexone.org/ldn_latest_news.htm

I am not sure what value they are to any company since so far as I can see they will not stop LDN being made available as a competitor to any licenced product. Time will tell, I have no patent law expertise to give you any guidance on that.

The evidence for LDN currently is that of clinical experience of stopping or slowing disease progress and in some cases minor symptom improvement.

The clinical experience of doctors experienced in the use of LDN given at the medical conferences is on line and can be listened to if you wish.

Here is a pub med article on the subject.

http://www.ncbi.nlm.nih.gov/pubmed/15694688

It therefore comes down to what you consider as acceptable evidence to try any treatment because in the case of LDN it is a cheap option even if you end up paying for it yourself due to the current post code lottery which affects LDN much like most other treatments for MS.

13

hi all!

how do i approach my ms nurse and possibly comnsultant and my local GP about being prescribed LDN plz?

i have mentioned it before to my ms nurse in passing but felt embarressed when she spoke about it very flippantly. i felt stupid and i shouldn’t believe what i hear

Also if this not an option than how much is it to buy plz and from where?

Also does it interfere with any other meds that one mite take?

thanks in advance guys

love

Anna x

14

I understand your Neuro not being able to recommend ldn, but did he/she mention anything about the harm it would do? Perhaps there was a tempting range of approved treatments to choose from?

Personally, I was far more concerned about the unrelenting progression of PPMS than taking a drug that was unlikely to do any harm and might help. The alternative was to continue deteriorating, so not exactly the hardest choice I have ever made.

Let me know if I can help with any questions you might have.

15

I understand your Neuro not being able to recommend ldn, but did he/she mention anything about the harm it would do? Perhaps there was a tempting range of approved treatments to choose from?

Personally, I was far more concerned about the unrelenting progression of PPMS than taking a drug that was unlikely to do any harm and might help. The alternative was to continue deteriorating, so not exactly the hardest choice I have ever made.

Let me know if I can help with any questions you might have.

hi whammie!

thnx for your reply.

my medics have said more about the fact that it is not a licsenced drug for MSers. they only mentioned that it was a drug for addicts coming off drugs or something like that. also the usual blurrb about not being properly tested and no evidence of helping us etc.

went to my ms nurse a few weeks ago and it was blatently obvious that there doesn’t seem to be anything out there for FATIGUE issues. i have tried the AMANTADINE but it was less than useless, even tho i gave it several months trial.

Often feel sorry for the medics as it mst be frustrating and embarressing saying to ppl all the time that they cant help you.

So i need to know what medications cant you take with it plz?

As i understand you shouldn’t be using other medicines whilst on LDN?

do you know what exactly LDN will do for ppl and exactly how does it do this?

thnx hun

Anna x

16

sorry forgot to ask about what is the ‘harm’ that it can do to ppl?

thnx again

Anna x

17

Most drugs (apart from DMD’s) routinely prescribed have not had a specific trial for MS and that’s not necessarily a problem. My GP prescribes ldn on the NHS, so it is perfectly possible.

Do you take any opiate based painkillers, because they are just about the only drugs you can’t take together with ldn? Of course, you must check with a medical professional for anything you are unsure about.

This site explains a theory of how ldn works. http://www.ldn-international.com/ldn-endorphins.html

It is impossible to predict how ldn might help (if at all) and results vary according to the individual. Take some time and read the anecdotal information at www.ldnresearchtrust.org and see if you think it can help.

I am not aware of ldn causing long term harm, although a temporary flare up of symptoms is possible. This is normally resolved by reducing the dose, or you can simply stop taking the stuff, as ldn only stays in the system for about four hours.

18

Read the whole of this thread, folks, and see what I pointed out to David way back on the 10th of this month:
Dr Bihari, who discovered the beneficial effects of LDN patented the application of LDN for several auti-immune diseases. Dr Bihari obviously thought that these patens had a potential commercial value. Those patents were bought last year (July/August) by TNI BioTech Inc, better known as a manufacturer of drugs for oncology. TNI BioTech announced back in October last year that they were going to set up a Phase III clinical trial to act as a precursor to getting LDN approved as an MS treatment. Since they are setting up a large plant in Central America to produce LDN, I think is is safe to assume that there is a serious commercial interest.

TNI have also announced that they hope to hold the price of their LDN product (subject to satisfactory trial and licence) down to 1$US per day (thats about 55-65 pence per day). They clearly think that the whole exercise will be profitable. The effect that this will have on our home-grown LDN industry remains to be seen.

There is, of course, NO evidence, that LDN has an effect of of slowing or stopping the progress of MS, that would be acceptable to any scientist. The “medical conferences” are not conferences as any scientist would recognise the term (notably due to the lack of any peer review of papers, and subsequent publication of those papers). A half day colloqium is not a conference.

The pubmed reference given above is valueless to most people. Who would want to pay $US31.50, just to be able to read the paper for 24 hours. No paper published in any of the Elsevier journals is free to read in full.

Geoff

19

Goeff

You can never speak for every scientist, if someone has invested money in setting up plants and purchasing patents then some scientist will have evaluated the clinical effects of LDN and felt there was evidence of effectiveness that can be proved by clinical trials.

Someone will have made a business plan for these actions and whilst the decision will have been based on money, scientific opinion will be involved.

We will just have to wait and see what happens.

Most drugs used to treat MS are not licenced to treat MS so licencing trials are not the only basis of prescribing decisions.

20

Some of these statements need addressing right now.

1 - “You can never speak for every scientist.”
This is true. But I can speak as a scientist, and as someone who has MS. I think that makes it 2-0 to me.
And, that is quite apart from the statement that a clinical trial could “prove” effectiveness. Trials do not prove anything - they demonstrate that a particular treatment has been shown to be effective under the trial conditions as reported. A scientist would then consider the statistical evidence from the trial and look for things like “p-values” and “SDs”, and make a judgement as to how effective the treatment seemed to be.

2 - “If someone has invested money …”
This comes from someone who has spent years telling the readers of this forum that the pharmaceutical industry were responsible for LDN not getting a trial. Now that a reputable pharmaceutical company has picked up the patents, and announced that the intend to hold a Stage III trial, there has to be a change of mind-set.

3 - "Most drugs used to treat MS are not licenced to treat MS … "
This is not true. David603 used to admit this a year or two back - just take this quote from December 2009:
"The DMD’s are licensed for MS "
or this quote from 2010:
"Tysabrie is licensed for MS "
Now his story has changed, and if it is true, then the MS Society are promoting unlicenced drugs.
He has been ask on several occasions to name the unlicenced drugs he refers to but has never done so.

So, here it is, another chance to name those drugs …

Geoff