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What is the MSS position on ....

Hi There,

Bit of a controversial one again sorry.

However, I really need to ask . . .

Can the MSS tell me what their ‘position / opinion’ is of the drug LDN please?

I am currently looking up what information I can find, however I am no expert by any means.

Also a few people (not on here btw) have suggested it to me to help with symptoms. I have also read up a little on peoples comments regarding it on here too and seen ‘for’ and ‘against’ arguments.

So as you can imagine, I am really confused about it now.

Especially when I found out that there are some surgeries actually prescribing it on the NHS now. FACT.

However, please do not think this is an attack on the society and NICE etc as it is just simply a query.

tc

Anna x

I believe that the MSS is doing a review on LDN at the moment. I’m not sure when it is due. I would happily bet a lot of money on the conclusion being that there isn’t enough evidence and that clinical trials are needed.

GPs can prescribe LDN, just like they can prescribe any “off label” drug. Most opt out because of the lack of clinical trial data, but some are happy to let patients try it. You can get it without a GP’s prescription through emed(?) I think though.

Friends of mine have had a lot of benefit from LDN, especially for bladder and fatigue. Others have had bad experiences. However, it’s got to be worth a try if you aren’t getting sufficient help from the more common meds.

Karen x

You might find:

http://www.mssociety.org.uk/ms-news-and-research/ms-research/new-and-potential-treatments/other-avenues-research/ldn

helpful

Thanx Annie B for your reply,

I have taken a look at the link.

From what I understand it is not for LDN as it had poor results. However, it doesn’t say the size of the sample they trialed it on.

I think I would have liked more of a ‘laymans terms’ breakdown of what they were trying to say really. As my concentration is poor at present and there did seem to be a lot of waffle on that page.

Thank you again for posting though hun,

tc

Anna x

At the MS Society AGM 2011 members asked for a review of the LDN as a treatment option, the summary was published and here is the link;

http://www.mssociety.org.uk/ms-resources/low-dose-naltrexone-ldn-–-review-clinical-trial-evidence

Regards

Hi Anna, I dont think it would harm you...(but dont take that as gospel, please) to try it.

About 2 years ago, there was a lot of discussions about LDN on here. I was very curious, but said I wouldnt try it without my GPs supervision. I spoke to her about it and she couldnt prescribe it for me.

After a bit more consideration I did try it…against my hubby`s wishes and he was mad with me.

I got it via E med and a letter from my MS nurse. At first it greatly imroved my bladder misbehaviour and reduced my leg spasms. But it severely disrupted my sleep…I woke every 2 hours and was worn out.

I stuck with it for 5 months and then gave up after the benefits waned.

luv Pollx

Hi Anna I recently asked my MS specialist about LDN but he said he did not like it as it was very addictive and very difficult to come off. Hth Teresa

Hello Teresa,

My understanding is that ldn is not in the least bit addictive and only stays in the system for four hours.

[quote=“whammel”]

Hello Teresa,

My understanding is that ldn is not in the least bit addictive and only stays in the system for four hours.

[/quote] Hi there You may well be right. This is what my MS specialist conveyed to me. Actually, I’m really glad you answered as Karen said you were the one to ask about LDN as you have found it beneficial. As I have no chance of getting anything else to help me as I have PPMS, I would be interested in your thoughts about it. Thanks Teresa xx

Frankly, I think it is a disgrace (or lazy) to give a PPMSer incorrect information, because we are not exactly blessed with approved treatments are we?

I have been taking ldn for eight years (on NHS) and my experience has been nothing but positive. It can take a little experimenting to get the dose right, but this is so much easier now we have a reliable supplier of liquid ldn. I honestly don’t think there is any harm in trying ldn and the worse that can happen is that it won’t work.

Let me know if you have any specific questions and I will happily help if I can.

In layman’s terms what the MS Society review says is there is insufficient evidence for LDN to be licensed for the treatment of MS. Since no one is saying there is sufficient evidence for MS to be licensed for MS I am not sure how helpful in guiding people on the use of LDN.

The problem with LDN being licensed for MS is that it has to be adjusted to suit each individual usually between 1.5Mg and 4.5Mg to achieve success - there is no standard clinical trial system to test a product in that way.

There is no funding source for phase 3 trails outside of the pharmaceutical industry to fund such trials because trials would be so expensive - this is a fundamental problem with western medicine leading to far too much control in the hands of the pharmaceutical industry. Nothing that can not profit the pharmaceutical industry gets tested.

Ver little commonly used to treat MS is licenced for MS anyway.

It is however cheap and readily available so anyone who wishes can try it.

Thanks everyone for your replies.

I actually went to my GP’s today and asked to try LDN for my RRMS.

Unfortunately ( and I completely understand and accept his stance on this ) he said No he couldn’t think about prescribing it to me. Apparently, there are actually some nasty side effects he has seen from people who it is liscensed for taking it.

I trust my GP’s at my surgery implicitly and they have always bent over backwards to help if they can. So, I am starting to believe there has to be some truth to what he told me today.

He then said that I should give the ‘Amantadine’ that I have been trying for fatigue, a bit longer to work. I was allowed to try this as a 'non - official MS medication as there has been information and evidence published for the GP’s to refer to. If I have this right that is?

So, I will give this a go for a bit longer.

Please don’t quote anything I have said as absolute truth though as things get muddled with me but I think I got the gist of it.

Thank you again for all of your thoughts on this,

Tc

Anna x

I understand that at 50 - 150Mg for it’s licensed application Naltrexone dose have nasty side effects. This is not the case at 1.5 - 4.5 Mg, many licensed drugs have nasty side effects Tysabrie can kill you for instance. It is all a question of risks v benefits. There are virtually no risks with LDN, that is why it has become so popular and it does stop disease progression for most people.

The problem is it is a cheap out of patent drug so will never be tested in formal trials so it will remain an available choice to those who take responsibility for their own health and seek out doctors to prescribe it.

Life has nasty side effects.

The chances of TYSABRI (please note the spelling) killing you are very very slim, especially with the montoring which routinely takes place with it.

I agree but the risk is still there so it is still a risk benefit analysis. If people want to try Tysabri I have no problem with that, LDN is just a safer alternative I think I would try first.

The problem with all new drugs is that the long term risks - benefits are unknown, the problem with out of patent drugs like naltrexone is they never get the attention of medical research in quite the same way because there is no profit motif. Both scenarios are less than ideal but that is the real world and we have to live with that.

LDN is NOT an alternative to Tysabri.

No, no, don’t try LDN first. You’d be taking an enormous risk and you won’t get the backup or support that you’d get from Tysabri. With MS, the more medical support you can get, the better.

I would never go on LDN alone - not after what happened to me. I had a dreadful relapse.

David603 doesn’t have MS. This makes a HUGE difference, as it’s not him staring down the barrels of a cannon. He can offer advice, but as it’s not based on his experience and as his knowledge of the DMDs and the newer drugs, Tysabri and Campath is not comprehensive, then I really would think twice before giving his opinion any credence. He and his wife don’t believe in modern pharmaceuticals - which is ironic, because LDN is definitely a modern (20th century) drug.

There is not enough evidence - either clinical or anecdotal, about LDN and aggressive relapsing MS.

I take LDN, but I got burned and won’t take it on its own again.

Thank you for your reply.

I am really confused now as really thought people like David were speaking from experience.

I am disappointed that there are perhaps people on these boards that think it is ok to play around like this with people with MS in genuine need of hope and possible new answers etc.

FOR SHAME ON ALL OF THE PEOPLE WHO DO THIS!

I am super confused now as I actually know a few ppl with MS who take LDN and are really chuffed with it. Having read an article online again, well it seems that there is an argument of ‘would people have improved anyway as MS is a variable disease after all’.

That was after another article written by some GP I think saying how great it was.

What I don’t understand is if the pharmecuetical companies make the drugs for curing cancers etc then why would they not make medicines that help with MS?

My GP was dead against LDN and now from what you say, it makes a little more sense now. Also, having found other articles online against it.

You both seem to be looking at this from a different perspective to the majority of people diagnosed with MS. Most people diagnosed with MS do not have the choice of the licensed drugs and anyway those licensed drugs are not proven to stop MS progressing, the newer ones come with the possibility of slowing it up for a bit, maybe long term we just do not know that yet, but not stopping it.

When I did my initial research for my wife in 2004 I contacted about 100 people with MS and with experience of useing LDN. Out of that 100 I found no one for whom LDN had not stopped disease progress. At that time I only found people in the US who were on licensed DMD’s as well and once they had found LDN worked for them most but not all stopped the licensed drugs and used LDN on its own. I also checked out the risk by tracking down a biochemist. Many people will not take the risks with things like tysabri, I personal think I would but these are individual choices.

You are right I do not have MS but then I would never try to make a case from one individual case anyway, the strength of LDN is the 10’s of thousand that find it works for them.

Fine for you to say you think the doctors involved with the LDN conferences is not sufficient evidence for you, others however take a different view and should be free to do so.

The bottom line is that the licensing system has failed to produce any really satisfactory solution to MS. That is the problem that needs fixing. Most people with MS are forced to take either no action or some treatment method not licensed for MS by western medicine. LDN is just one of the really popular choices, it is not the only one and nothing licensed or not works for everyone.

I am so angry I may well become incoherent!

David - I am truly SHOCKED that you would be irresponsible and fanatical enough to suggest someone try LDN instead of Tysabri. Tysabri is given to people with highly active MS. How long until one knows if LDN is working for one? 6 months? A year? 2 years? In that time, someone with highly active relapsing MS could be unlucky enough to have several relapses with untold consequences.

Your sample size of 100 at a time when very few people had even tried DMDs is fatally flawed. To get a measure of how something is working you do not rely on self report from people with psychologically-vested interests, you do not rely on so few people, you compare that sample to another on alternative treatments,… I could go on! There have been numerous posts about LDN on this website since I joined. On EVERY SINGLE ONE, there are some people who say LDN helps their symptoms, but not their progression; some people who say that LDN has helped their progression; some people who say LDN did nothing for them despite trying different doses and giving it enough time to work; there are even a few who say that LDN made their MS worse. And yet you disregard this variability EVERY time, preferring instead to believe your fatally flawed sample and the gatherings of like-minded individuals at your get-together “conferences”.

I actually wish that I had been mad enough to through away my DMDs and take LDN instead at your recommendation. So I could SUE YOU for your woeful neglect of reality.

LDN does NOT work for everyone. LDN does NOT stop progression in most people. LDN does NOT stop all relapses. LDN is NOT an alternative to Tysabri.

And, David, Tysabri is not a type of cheese - leave the “e” off!