Hi All
I have PPMS as there’s not much else out there for us I’m thinking of trying LDN,
Is it easy to get hold of I was looking at the website do you need to get a private
prescription or can you contact Dicksons direct.
Any advise would be welcome.
Thanks Sue x
Your GP can write a NHS prescription and suggest asking them first. I doubt they will have much knowledge of ldn, so take along the GP’s information pack from www.ldnresearchtrust.org and leave it with them to read. If this route fails ldn is easily available privately and the details are on Dicksons site.
I have used ldn for eight years to treat PPMS and my only regret is not starting it sooner.
I do not really have anything to add to what whammel has said but my wife has been on it for eighth years, it has stopped all disease progress and she is just a little better. Like whammel she wishes someone had told her about it earlier.
[quote=david603]
I do not really have anything to add to what whammel has said but my wife has been on it for eighth years, it has stopped all disease progress and she is just a little better. Like whammel she wishes someone had told her about it earlier.
Thanks for your reply think I will give it ago nothing to lose if it can stop or slow down the progression then it will be well
worth the money. Hope your wife is coping.
Sue x
Give it a bash, you’ve got nothing to lose. I’ve been on it since October and haven’t noticed any improvement yet, however, I don’t think I’m getting any worse either. I decided to give it a year to see if it works for me. My GP wouldn’t prescribe it, so I get a private prescription from Emed, they send it directly to Dicksons who then send the drug up to me (I’m in Aberdeen). It’s easy enough to set up and they give you instructions re dosage, etc.
Good luck
Luisa x
Hi Luisa
Thanks for your message think I will give it ago like you said nothing to lose and seams alot of people have improved symptons from using it not much else out there for people with PPMS.
Keep well
Sue x
l was only talking to a ms friend this morning about LDN - my thoughts are the same as Whammel - why oh why did l not know of this years ago. l have had SPMS for 30yrs - its only the last 3yrs that l have been on LDN. And yes it has made a difference - l have had improvements and l have not progressed. But one thing l have only just realised is that for years and years l suffered the most terrible Trigemenial Neuralgia. lt got so bad at times that l could have killed myself. Anyone who has suffered it knows how debilitating the excruciating pain is. BUT - touch wood l have not had it for the last 3yrs.
Coincidence - quite possibly - makes you wonder though. The main benefit of LDN is that it makes you feel so much more positive - more able to cope with ms symptoms. And that is good enough for me. Less fatigue - no brain fog - more energy.
lt is certainly not a cure - so far nothing is - but to be able to take something that does not have nasty side-effects and makes you feel good will do for me. lt also helps with bladder control -[ which is why many folk take it alongside dmd’s.]
l had to get mine through e-med/Dicksons - you need a letter from your GP stating that you have MS. But l do think that many GP’s now will prescribe it if they are presented with the correct information from the ldnresearchtrust. Especially if you are PPMS/SPMS.
All the best
Frances.
May I just throw in a big, fat negative?
Low Dose Naltrexone is an opiate antagonist meaning that, if you take opiates (e.g. codeine) while LDN is in your system, you could quite possibly find yourself excruciating agony. That said, LDN apparently only stays in the system for hours, not days.
This, so far as I know, is the only downside of LDN. Provided you start off on a very low dose (say 1mg or 1ml) and work up to your preferred low dose (probably 3mg or 3ml), then you should be fine with only minor side effects along the way.
I had some spasms and a slightly upset tummy for the first week or so on 1.5ml, but then bumped up to 3ml and was fine after another week or so. (I’m RRMS and have been on LDN for five years.)
My GP won’t prescribe because it’s not on the local PCT’s formulary,
Lolli xx
Hmm, don’t know how I managed to lose half a sentence there! But I’ve thought of some more to say anyway
As I was saying before so rudely interrupting myself, my GP won’t prescribe because it’s not on the local PCT’s formulary, so I’ve signed up with Emed, who send the script direct to Dicksons, who post the meds every month. You can see online when Dicksons are going to despatch, so can ask nicely to have the date changed if you’re going to be away. This system’s a little more expensive than having your GP prescribe. (My last GP was happy to prescribe, but I moved out of area, tsk.)
Annual emed membership fee: £20
Quarterly emed script request fee: £15 (i.e. £60 per year)
Monthly LDN Dicksons price: £17.50 (i.e. £210 per year)
Total = £290
Dicksons will dispense capsules if required, though I think they’re more expensive.
Lolli xx
Hi
I don’t want to put a downer on this, but I tried LDN last year and it was awful for me. I understand it may work for some, but for 6-8 weeks I was crippled with side effects from starting at 1.5ml and had to drop down to 0.25ml it was that bad. The pain in my legs was horrendous and I had to revert back to walking with a stick.
I’m not sure why David603 keeps saying it has stopped the progression of his wife’s disease. It’s misleading and you need to gain accurate information before deciding, talk to your GP or neuro. Despite what some people may say, they are not just there to line their pockets and gain incentives.
I would never advise anyone to take LDN, the side effects were awful and of all the people I have known on it, only one of two have gained a little sympomatic relief, just a little, nothing significant.
Keep your options open by all means, but don’t believe everything you are told re the ‘miraculous LDN’ and stopping progression.
Best of luck.
The fact is my wife’s MS has not progressed since she has been on LDN for the last 8 years, so that is why I keep saying it.
However there are people with a lot more qualifications than me who report similar results and I would never suggest anyone just acted on one persons individual experience.
http://www.ncbi.nlm.nih.gov/pubmed/15694688
There are plenty of medical conference to listen to.
http://www.lowdosenaltrexone.org/events.htm
http://glasgowldn2009.com/category/conference-sessions/
Or maybe just read the record of recent debate in the House of Commons for views other than our experience.
http://www.theyworkforyou.com/debates/?id=2011-12-08a.490.0
This debate was achieved by ldnnow.
I am not about to get into another argument, so I will just state for the record that I would certainly try LDN if I had PPMS, however I would keep my expectations firmly in check: it does not work for everyone and it does not stop all progression.
Now, as far as the “evidence” that david603 cites goes:
The pubmed link leads to what is, in effect, a call for clinical trials. It contains no scientific evidence.
The “medical conferences” that David refers to are, in fact, merely a gathering of people who are in favour of LDN. There is no doubt that LDN gets a glowing report at these things, but that is hardly surprising. A similarly unscientific exercise would be testing the existence of Santa Claus by surveying 5 year olds.
Similarly, the House of Lords debate does not present any scientific evidence. It merely stresses the fact that GPs can prescribe off label if they believe that it would benefit their patient.
The lack of evidence doesn’t mean that LDN isn’t worth a try, but it’s important to understand that there are no clinical trials or even research studies demonstrating that it works and some people have less than positive experiences with it. Most of all though, expectations need to be kept under control.
Saying all that, I hope it works really well for you Sue!
Karen x
Hi Sue,
LDN appears to be a fairly benign treatment in that it appears that most side effects are minor and transitory but I think the main thing is to have realistic expectations from it. Although any people are fully in favour of it, their praise, such as that given by David603 above, needs to be balanced by factual information about MS as well.
Plateauing of MS is a feature of the natural disease course and so it is impossible to know whether David’s wife may have experienced this same halt to the progression anyway without LDN…
Some patients, even those with a progressive form of multiple sclerosis (MS), do reach a plateau where symptoms don’t seem to worsen. Predicting which patients might reach this point where the disease may “burn itself out” is not possible, which can frustrate patients and physicians.
http://www.mayoclinic.org/medical-edge-newspaper-2009/jan-16b.html
I could go on listing many more exmples but if you enter “does multiple sclerosis progression plateau” into a search engine you can read more about the natural plateauing effect in MS for yourself.
Don’t forget that places like Dicksons also have a vested interest in promoting LDN as it is a nice little earner for them. To compound the medicine is at a minimal cost and they are making a profit in the region of £400,000 per annum from the sale of LDN alone. I am not implying by this that Dickson’s is doing anything wrong but it is always a good idea to be aware of anybody’s vested interests when doing research.
Many people recommend LDN for its effectiveness in symptom relief but there are also other medications available for this as well. Talking to your neuro or MS Nurse about your most troubling symptoms and your options in dealing with them could also be helpful
Best of luck in whtaever you decide to do,
Belinda
Hi
Have been using LDN for approx 6 years and it has stopped my MS disease progression. I am with whammel and david603, I just wish I had started it sooner.
Please do take a look at the LDN research trust site
Very best
xxxx
The link (above) to the parliamentary debate caught my eye, and I re-read the whole thing – thinking “Was that it?” Just three speakers, one of whom was a minister. Then, looking through the main speech from the main speaker (Nia Griffith MP) it was the inconsistencies (or anomalies)that caught my eye. Just a few highlights:
A constituent uses LDN at a cost of £17.50 per month (that’s about £210 a year) and yet the “estimated” cost of LDN is given as “up to £3000 per year” when the same MP talks about a clinical trial. An earlier post in this thread uses the same figure, so it is probably right.
The cost of Copaxone is given as £60,000, which seems a little high compared to the figure of £14,000 given by NICE when they turned down Gilenya at the end of last year.
There is a paragraph:
“The question is how we can get the trials and get people interested. Academics often rely on backing from pharmaceutical companies to put together their plans and proposals for a research project. It is very difficult to find academics who want to spend that time and energy if they do not know that they will get the backing. They could put in a lot of work without getting any funding for any proposal.”
This is so out of touch with the reality of bids for research funding that one must ask where she got her figures from. Most academics will tell you that they can spend up to 25% of their time on bids that do not get funded. Certainly, I have worked on three bids involving figures in the multiple millions – one was a winning bid, and the other two did nothing except cost money preparing the bid. One, please note, was for funding under one of the EU Research Frameworks – and had nothing to do with any drug company.
There have been several suggestions on this forum as to how LDN treatment could be moved forward to a formal trial, but the more active proponents of LDN always seem able to find excuses as to why this cannot be done – yet they continue to blame the fact that LDN is a generic medicine for the lack of funding for a trial None of this came up in the debate, so perhaps we should ask who supplied Nia Griffith MP with her data, and if – in fact – they really want a trial.
Geoff
Given that Sue (the original poster) has PPMS the DMDs aren’t terribly relevant in this discussion but for any RRMS people reading this do bare in mind that the DMDs have been through extensive trials and have been shown to have a clear and definite benefit in reducing both the frequency ad severity of relapses. The logitudinal studies as to the effect the DMDs have on progression is still out as that data is only now coming to light but LDN has not been through any clinical trials to date so any testimonials regarding its benefit can only be based on each person’s individual experience with it.
LDN users 'believe" it helps with MS, DMDs have been proven to help.
Belinda
Hi thank you all for your comments think I’m going to give it a try nothing to lose and there’s nothing
else out there for PPMS will keep you posted.
Thanks again Sue x
Sue,
Make sure you get the ldnresearchtrust gp pack - this gives your GP all the relevant up to date info. Seems to be working for many now. lts time are GP/Neuros learnt more about MS.
i have been on it for six years am i progessing yes, but has it slowed it down I would probably say yes, though do we know for sure. I hate this day as it is my birthday and I know that I naturally think how things where the year before and i can honestly say there isn’t that much difference since last year, the only issue that i had was going on the ‘standard’ drugs which set me back greatly so i no longer take these . I take 2mg a day thinking of increasing this but will have to do it privately as doctor doesnt want to increase the dose, I also have had no side effects I however cant say this of the standard licenses drugs
trish
Morning to all, I have read ,I hope, all comments and I am going to GP on Thursday 14 Apr ans also MS nurse, armed with info, but any ones more recent reflections on LDN would be rally useful! So please, any comments? Thanks,
RustyK