Forum

LDN

Hi Folks,

Just started LDN, liquid for the first month and then on to capsules - anyone wanting to share experiences would be appreciated.

Thanks and a happy Christmas - its the 1st of December after all

hi luv just reading the posts i have been on ldn for the past couple of years now if nothing else it takes away the pain in my legs but i think its too late to get any other sort of benefit from it i family now have spms ,but hey there are worse things it could have been so enough of my moaning happy christmas to you and your family xxxx

Hi ‘Redman’, it is the 1st of December today indeed so my children were after their first chocolates this morning… I have been thinking about using LDN, but as my GP does not want to prescribe it (“It has not been officially acknowledged as medication”), I have been advised to approach a company in Glasgow (which I have not done yet). Would like to know what your findings are (after a certain period of course,…and apologies that I am ‘returning the ball back to you’ as that was not really what you asked for…)

Also, I am glad that there was some information available via your profile, although it would be useful to know the stage of MS you are in now plus your age…

I suppose this helps to create some ‘more complete kind of picture’ (excusez mon anglais…) of ‘the sender’…

My wife has been LDN for just under 8 years. some improvements but the main benefit has been complete stability ie. no disease progress. She was going down hill very fast before LDN

It’s a long time ago now, but I went onto LDN quite slowly, starting I think on 1.5 ml for the first week or ten days, and had some side effects before experiencing an epiphany.

OK, maybe not an epiphany, but I realised that the side effects weren’t as serious as MS progression and I ought to stick with it for a while, so went up to 3 ml and my body settled down within another couple of weeks.

The side effects were leg spasms, runny tummy, sleeplessness

One disabling relapse - from which I remitted spontaneously within six weeks - in five years whilst on LDN leaves me very happy.

And, fortunately again, I’ve never needed to stop LDN for any reason, such as needing to take an opiate based drug. A pharmacist will always help when you’re getting over-the-counter or prescription drugs if you say “I take an opiate antagonist” - no idea what that means, lol, but better safe than sorry.

You’re not saying it’s Christmas again soon, are you?

Lolli xx

P.S. Really peeved that my new GP won’t prescribe LDN on the NHS or privately and I’m having to pay a private doc for a private script. The drug itself’s the cheap bit now!

Thanks for your replies folks - yep its Christmas and i have to pay for the scripts as well - think its going to be around £30 a month

Hello all,

Would anyone mind telling me what LDN is? I have SPMS and am on Rebif, but I am ever interested in knowing of any new drug that might be available. Thank you very much,

Moira

Hiya,

Moira - LDN is Low Dose Naltrexone, it’s a drug that is licensed for helping addicts (at a much higher dose, suppose they just get Naltrexone). It helps a lot of people with MS and other diseases and there’s a website you can look at for more information - www.ldnresearchtrust.org - NHS docs are reluctant to prescribe it for MS because it isn’t licensed for that. I get my prescription through an online company called E-med who send it to a pharmacy in Rutherglen called Dicksons and they then send it up to me in Aberdeen.

I started taking LDN at the beginning of Oct, they advise that you start on 1.5ml per day and increase it by 0.5ml every fortnight, but not to go over 4.5ml. Apparently you’ll know when you’ve taken too much. I got to the first week of 2ml, and realised that my neck was so sore that I couldn’t move my head (muscle pain can be a side effect), so I stopped for 3 days and restarted on 0.5 ml, I’m halfway through my fortnight of 1ml and so far so good. I haven’t noticed a difference in the MS yet, but it’s early days.

I really hope that I get the benefits that people have talked about,

Luisa x

I will also follow your LDN experiences with great interest Luisa, thank you for that.

Seems to me the problem is that if something is licensed for MS it is too expensive so you can not have it.

If it is not licensed such as LDN then you can not have it because of so called lack of evidence. The NHS needs to decided what it wants, cheep or licensed because at the moment it just does not treat many people with anything.

It does seem however if you allow it you can be filled up with multiple combinations of relatively inexpensive drugs not licensed for MS and not tested in the combinations they are given on anyone for anything.

Evidence based medicine? I don’t think so. Money based medicine.

My view is that MS, along with quite a few other diseases, is at the bottom of the pile, so they don’t bother with it. 10 years ago the slogan for the MS society was 50 years fighting back - so in 60 odd years, they have only found one type of drug to help with the disease, and even that is not that effective (reduces relapses by a third), all the money that has been put into research has not even come up with what triggers the disease, they’ve done nothing but skirt around the edges of the problem, they don’t actually know anything concrete about the mechanism of the disease. When people find benefit from changes to their diet; HBO; other drugs, all the anecdotal evidence is ignored by the health professionals because trials have not been done - if MS was a more “fashionable” (for want of a better word) disease like cancer seems to be, then I think that more attention would be paid to these other treatments that people find works for them, and I think that an effective treatment, if not a cure would have been found by now. We keep hearing tantalising stories about new treatments in the news, but they’ve all been a flash in the pan, and none have seemed to make it into the realm of affordable; accessible treatments. I find this whole thing very frustrating.

But this is just my view

Luisa x

1 Like

thats just what i think too Luisa, i was told 20 years that a cure was just round the corner, some coner !!!

Theres nothing very much changed at all, since i got diagnosed,they arent interested in MS at all and i dont think they ever will be either.

We have to become our own ms expert.

jaki xx

Jaki - you are so right when you say we have to become our own experts. l have had ms now for nearly 30yrs - and have yet to meet a consultant/specialist

who knows anything about the illness. l have learnt a lot from this forum - and l am so glad l found out about LDN and VitD3. Most of the meds prescribed for

pwms are not licensed for ms use. They are usually for epilepsy/ HIV/ bi-polar/ Parkinsons.

l had an appointment with my GP this morning. l asked about Vit B12 injections - as l have never been offered any. l mentioned that the majority of folk on this site

have regular B12 injections. The GP says it is only for pwms who are on DMD’s - as the side effects of these drugs is that they kill off lots of nutrients vital to our health. She did say she would look into it.

Frances.

I’m not sure about ‘the majority’ of folk on this site having regular B12 injections, but your GP seems to be talking through her stethoscope. B12 deficiencies in B12 were noted long before DMDs were available to the masses.

I’d refer her to the Journal of Neurology, Neurosurgery, and Psychiatry 1990;53:951-954 “Vitamin B12 and folate concentrations in serum
and cerebrospinal fluid of neurological patients with special reference to multiple sclerosis and dementia” (T Q Nijst, R A Wevers, H C Schoonderwaldt, 0 R Hommes, A F J de Haan). There may be better articles to cite, but the date of this one seems pretty conclusive.

But it might be best to wait and see what she comes up with before pointing out that vit B12 deficiencies don’t appear to be linked to DMDs!

Lolli xx

B12 deficiences in PwMS, is what I meant to say, duh!

Thanks for the comments folks