Forum

LDN (an unlicensed DMD?)

Interesting article about LDN.

http://www.dailymail.co.uk/health/article-2287025/It-costs-just-82p-day-wont-NHS-drug-halts-MS.html#ixzz2MQMS9ZQx

Sigh…LDN isn’t a DMD (nowt against it, tried it for 12 months - with the approval of my then fab now emigrated to Aus neuro & prescribed by my GP) - unfortunately no difference noted so stopped. The Daily Heil must be having a quiet day - [inappropriate language edited by moderator] barbecuing HRH’s swans whist she’s glued to the lavvy to target… Nothing against LDN - it relieves some symptoms in some people which is wonderful. I gave it a good go for 12 months but there was no effect for me. And to reiterate…it isn’t a DMD…and it isn’t a cure…

Darren - why don’t you try LDN along with your Avonex. Then you can report on how you are doing?

I did very well on LDN and Rebif. Despite the views of some older commentators on the LDN sites, it’s perfectly safe to take both drugs at the same time.

PLEASE READ NOTE FROM MODERATOR BELOW.

Also, those endorphins may help you to feel better.

As for progression? Well, until you’ve been diagnosed for a while, you can’t tell if you are progressing or not.

I didn’t find out that I hadn’t progressed until 9 years after diagnosis - I’d had ups and downs and a very, very long relapse in 05.

Give both a go. You may well find that you feel very good.

K

x

Wow!

LDN is certainly gaining credibility, endorsement from no less than The Daily Mail!

Except the fanfare headline of “halts MS” isn’t borne out by the rest of the article. In fact, final observations include: “Effects [i.e. benefits] were minor”, and “Isn’t a miracle cure”.

Sorry but I understand that the term DMD refers to a drug that modifies the course of the disease. All the available evidence is that LDN does that for some people so you may not be convinced by that evidence and that is you right but others are and try it. This is just one report in thousands.

Here is another reference to that evidence

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

David,

I read the abstract you have linked to above and this is not evidence of anything. It is merely recognition that many users of LDN have found it beneficial and then a hypothesis is drawn to the possible action that may cause this. A hypothesis is NOT evidence; it is question that needs to be tested.

A DMD has to meet very specific disease modifying criteria to be included as a DMD, particularly MRI evidence of reducing the number of lesions in a given time frame. Because lesions are the visible and measurable signs of disease activity they are used as proof that the drug is actually physically modifying the course of the disease process.

Many drugs have an impact on MS with out being a DMD. Many drugs can alleviate some of the symptoms of MS and LDN appears to fall into this category, which is excellent for those who gain benefit from it. I gain excellent symptomatic relief by taking Tegretol but this does not make it a DMD as it has no affect on the lesion burden.

Please learn to read abstracts correctly and recognise the difference between a hypothesis and actual evidence and equally please do understand the difference between a DMD and a drug giving symptomatic relief. They are both very important and both have essential roles to play in the management of MS but it is important to stick to the accepted terminology to avoid confusion.

B

David

LDN seems to help some people with some of their SYMPTOMS but it does not modify the course of the condition - as in reducing the number of relapses or the severity of them.

In that case every drug that helps symptoms must also be a DMD…eg. baclofen, gabapentin, pregabalin etc…Is that what you are saying?

Hello,

I did a google search " ldn as a ms dmd", and i see a few of ms forums with people only using ldn as a dmd. Some claim to be relapse free with it and others don’t.

Never knew it was used as a dmd by a few people. Didn’t even think it could be.

Darren

LDN isn’t a DMD - the term applies to a specific range of drug therapies for people with MS:

Licensed DMD’s

Beta Interferon (Avonex, Rebif)

Glatiramer Acetate (Copaxone)

Natalizumab(Tysabri)

Fingolimod (Gilenya)

Unlicensed DMD’s

Mitoxantrone (Novantrone)

Azathioprine (Imuran)

IVIg (intravenous immunoglobulin)

There’s some excellent information in respect of DMD’s in http://www.mssociety.org.uk/sites/default/files/Documents/Essentials/Disease%20modifying%20drugs%20(MS%20Essentials%2006)%20ES06.0313%20-%20web.pdf

LDN can be a wonderful treatment to relieve some of the symptoms of MS in some people. However it is not a DMD.

Just to lower the tone of this useful post,I wonder if when viewed from certain quarters DMD means Dollar Making Disease.

'Praps LDN means Low Dollar Number,with it being out of ‘copyright’ ‘n’ all that,

Please continue with the debate,

Wb

Hello,

Not sure if i am allowed to post a link to another ms forum, but one i found about people claiming ldn “will be the only pharmaceutical protection between me and a relapse”.

Sorry if i have broke the rules but here is the link…

Thats just one thread i found, if people claim it is working for them i can’t argue with that. I just don’t see it as a dmd. Maybe time will tell.

Darren

I have been taking ldn for nine years and not had a single relapse in all that time. Mind you, I do have PPMS.

hiya

i have been taking it since 2007. 11 relapses in the 2 years before i started it. 2 relapses since but both have been mega. do i regret my decision? no-def not. is it a dmd? no. did it give me 5 brill years. yes. *one day at a time…la de da

ellie x

Do l take LDN ? - Yes - last 6yrs…

Has it ‘modified’ my disease ?- Yes - My SPMS has not progressed in 6yrs. l feel much better - no ‘fog’ - no TN- no hug - better balance - better mood - less fatigue.

Have l tried other DMD’s ?- no - never offered them as l have SPMS.

Do other DMD’s have the same effect as LDN? - Can’t comment as l have never tried them.

Darren, l always enjoy reading your posts - as you are ‘open-minded’ - and it is a good idea to look at other forums - l shall look at the link. And you are right - you can’t argue with people who make claims about the efficacy of what they are taking. Anymore then l would dispute anyones claim that the DMD they are on works well for them. When l read about how much improved someone is on a particular dmd - l am happy for them - l would never tell them otherwise.

F

Not quite correct there, Wb. LDN - as a treatment - was patented by the guy who discovered that it had some beneficial effects (Dr Bihari). He sold the patents last summer to TNI Biotech Inc, who were in the process (last autumn) of setting up a Stage III clinical trial.

If the trial is a success, then there is a prospect of actually getting LDN approved by NICE (but don’t hold your breath).

If it does actually have an influence on the lesions, then, and only then, would it be appropriate to call it a DMD. Up to that point, it remains something that some people have found to help them.

Geoff

[quote=“woblyboy”]

Just to lower the tone of this useful post,I wonder if when viewed from certain quarters DMD means Dollar Making Disease.

'Praps LDN means Low Dollar Number,with it being out of ‘copyright’ ‘n’ all that,

Please continue with the debate,

Wb

[/quote] Ha Ha Steve, lt has been said l am a ‘cheap date’ as l do not drink alcohol [or smoke] and to top it all l am on the Low Dollar Number - Like it - lf they do ‘trial’ it and it gets re-licensed - l bet they put the price right up!!

Fx

Trust you smart a…

Got any sailing organised for this year?

x

Sadly not and haven’t been sailing for a while now. The school that grew from the ashes of the old “Multiple Challenge” stopped doing MS specific cruises and not been since. Perhaps I should look them up again and see if they are still going.

I hope you are as well as can be.