hi all
i’m new to this forum & ms, i was diagnosed with ppms last nov.
my wife dicovered ldn and after much reading i realised it could help a lot of my symptom’s.
the question is will my nuero prescribe it, is it available on the nhs?
just wondered if anyone has any experience of this drug and was the dosage 3mg/day?
i’ve seen it available for £30 for 30 day course on the net.
thankyou
ben
Hi Ben & welcome to our little gang…
There are a couple of people on this ppms board that are either using LDN or have tried it. I have not but some people swear it helps. Hopefully they’ll see your post and respond.
There’s also people with RRMS who use it, so posting on the EL board will get a bigger response (we are a much smaller group… as you probably know, only around 10% of MSers have ppms).
Most GP’s and neuro’s will not prescribe it as it hasn’t been recommended by NICE for use with MS. Also I think that the patent has run out on it (it was developed years ago) so there’s no money to be made out of research. That’s what I’ve heard but not sure how true it is.
I believe the MSS (this site) has done some research on it without any dramatic results. Look around on this site under ‘research’.
Most people who use it buy it from the ‘LDN Research Trust’. They have a website & you can buy it from them. Check it out.
Good luck with it. No harm in trying as from what I’ve heard it’s easy to come off of.
Nice to see you on here. Come back soon,
PatB x
Hi Ben, I tried LDN last year but could not get it prescribed by my GP or neuro. They can be very stick-in-the-mud about it . I had to get a private prescription through e-med and then order it from Dickson’s the chemist in Glasgow. I found that it was not for me as it made some symptoms a lot worse, even in small amounts, but that does not mean it will not work well for you! Give it a try or you’ll never know - some people swear by it! The expert on here about it is Whammel. I am sure he will come on and give you sound advice! Hth, Teresa xx
My GP prescribes ldn on the NHS and has done for years, so no harm in asking. If this route doesn’t work then it is easy to get via a private prescription and liquid ldn costs £18.50 per month.
There is no ideal dosage and it depends on how the individual tolerates the drug.
You can find some reliable information at www.ldnresearchtrust.org and it also has a useful GP information pack.
For liquid ldn: http://www.dicksonchemist.co.uk
hi all,
thanks for your responses but i have spoken with my neuro and he doesn’t think it’s a good idea
i was excited yesterday but after talking to him…
cheer’s
ben
A neuro said the same sort of thing to me, but he wasn’t the one with MS. I hope the alternatives offered are successful.
I agree with Whammel Ben. The neuro is not living with a chronic disease with no treatment available. This is the only thing that has helped some people with PPMS. Sometimes it is worth taking the bull by the horns yourself! Teresa xx
My current neuro doesn’t approve of LDN and said I was wasting my money. When I told him how much it was costing from e-med (prescription) and Dickson’s (Chemist) he took back the “wasting my money” comment, still not for it though.
However I was pretty sure I had ppms before my dx and had already research LDN. The possible side effects were minimal (especially compared to some of the symptom controlling drugs I read about) and I read that it slowed progression. I was taking it as soon as I could after I got a letter of confirmation of dx. I felt that I had nothing much to lose and possibly much to gain.
Whether it’s the LDN or something else or just what would have happened anyway I have had only a very small amount of prgression since dx and no progression since about 2 months from starting LDN - it’ll be 3 years in April since my dx.
I’m on 4.5mg and got to that by increasing 0.5mg from 1.5mg start every few weeks or less. I have had no side effects, except it took awhile to get used to the awful taste. I also had noticible improvement in some of my symptoms. That improvement has not continued but I’ve never lost the improvements I gained.
I fully take on board that I might be paying for and taking something that is of no help but I’m not planning on stopping taking the LDN to test that theory! 
Best wishes what ever you decide, J.
Hi Ben, I normally only read this section of the forum rather than post as I have SPMS not PPMS. However I thought my LDN experience might be of interest Out of sheer desperation I decided to try LDN. I didnt bother try to get it on the NHS…not a lot of point really whilst they are making such huge cut backs! I have been taking it for just over a month now…started on 1mg and by next week I will be on 4.5mg. No side effects other than the odd crazy dream but I have already had one major improvement…I have suffered mega bowel problems since 1985, not helped at all by anything I was given in the way of meds, so I feel positive it’s the LDN. Had the problem so long now that I’d started to accept it as “normal” for me So it came as quite a shock,albeit a nice shock , when it started to show signs of improvement! …it’s been such a long time…I’d forgotten what it was like!! Good luck if you decide to give it a try…well worth it, so far, in my opinion. Best wishes Nina
hi all,
since my last post you’ve ALL said what i’ve been thinking!!
THANKYOU ALL!!
i’ve only been diagnosed since last nov so am a bit wary of making theese choices myself. i love this website because you get feedback from the only people who truly know what we’re going through… us!!
still not getting DLA so can’t afford it yet but i’m seeing the citizens advice in the morning and launching my appeal and believe me i’ll be getting some straight away!!
thank’s again all of you, you’ve given me the confidence i needed to take that decision
gratefully
ben
sorry to be a pain but what is LDN. i have never heard of it. also has anybody any experience of using chlorazapam to help with cramps and spasms at night.
Hi Mrbardsly, LDN is Low Dose Naltrexone. In high doses it is used to help people kick hard drug habits, but the low dose one has been found useful for lots of conditions inc MS.
NICE has not recommended it for MS so it’s hard to get a prescription on the NHS. People who use it buy it privately on the internet. ‘The LDN Research Trust’ is a good place to look. The MSS did some research on it recently but without any dramatic results… look on this site under ‘news and research’ (at top).
I don’t take it personally but lots of MSers do and some people swear by it. Others have side-effects and come off it or don’t notice any difference.
I don’t use chlorazapam either but hopefully someone else on here will respond.
Oh and you’re not a pain at all! The only reason myself and others know about this stuff is because we’ve been trawling through MS info for years!!!
Hope this helps,
Pat x
Hi benbaker75 I too have ppms dx 2 years ago aged 44. The answer to your first question is no , doctors tend not to put faith in it . Next question also no , at least not yet. My advice to you is go for it. It’s a no brainer. I myself have been on ldn for a little under a year and it works for me , within the first week I was able to come off all my other pain killers giving me my head back. I go through e-med for my prescription for 4.5 ml liquid it cost £20 a year subscription and £15:00 per script lasting 3 months which goes directly to Dicksons pharmacy in Glasgow who supply the liquid direct to your door for £18.50 . Good luck and don’t make the mistake I made by upping the dose too quickly which is probably what you will want to do . Start at 1.5 ml then up 0.5 every couple of weeks until you reach your dose mine is 3.0 ml. At first you will find you will wake after an hour or two but that will pass , just stick with it.
LDN.thanks for that information . i have been diagnosed with ppms for 11 years . i only take chlorazapam having tried baclofen and various others. it does help me sleep eventually. LDN i suppose is worth a try. but if i understand all the posts correctly it is only symptom relief.
Hi Ben,
It sounds like I am in a very similar situation to you so thank you for posting - I was diagnosed with PPMS in January. My neuro said I was lucky as I didn’t have the anxiety about relapses that RRMS people have. and my progression is quite slow. I don’t feel particularly lucky, but I guess I see his point.
Like you, I’ve heard about LDN. Like you, I think I’d feel unsure about going against my GP and neuro if they warned me against it, altghough to be fair I haven’t raised it with them. If stuff comes up about LDN on this forum I always read it to learn more.
I’m not very bad yet - Most of the time I feel I’m coping OK, but when I think back I realise it’s been relentless over the last year at least, and I don’t think I would be so hesitant about trying something like LDN if I get much worse, and worse is all it seems to get, however slowly.
I wish you all the best.
Dave
I find it difficult to understand why you would want to get worse before trying ldn. It is unlikely to correct damage already done and like most treatments it’s best taken early.
All the best whatever you decide.