I know this is something that has been discussed already on this forum but has anyone tried it? My GP and Specialist have both refused to have anything to do with it and have also refused to give me a letter stating that I was diagnosed with MS to stop me going to a private clinic to obtain it. I’m about to start on rebif as well but having spoken to a friend who’s sister was in a wheelchair and after taking LDN can now walk unaided again it sounds like something that is at least positive as opposed to injecting a DMD which has no effect on day to day symptoms. Anyway would be grateful for any thoughts.
Hi Lou, yes, lots of folk here swear by LDN. I tried it some years ago, but initial benefits soon waned, so I gave it up.
Most people get a letter from someone who can confirm their condition. I got mine from my MS nurse.
You need a letter to buy LDN from a chemist in Scotland. But first you get a precription via E-Med. It is all above board, so dont worry about that. it costs around £20 a month.
Do you have an MS nurse who will do a letter for you?. It is rare that GPs and neuros believe in it and prescribe, but it does happen.
The story about our friend`s sister sounds a little too good to hope for…but you never know.
luv Pollx
So far as I know you are entitled to a letter stating you have MS, I would suggest you make a few enquires. Citizens advise, local PALS etc
My wife has been on LDN for 10 years, no disease progress in all that time. She was going downhill very fast just prior to starting LDN
Your GP - cannot refuse to give you a letter stating that you have MS - lf you do have a MS nurse - then do try them. There are many folk on here whose GPs do prescribe it.
l have been taking it for about 6yrs. And it is the best thing l have taken. l also have not ‘progressed’ since taking it. But its the ‘feel good factor’ that it gives you by boosting your endorphins - making you feel more positive - more able to cope with all the MS symptoms.
Don’t be fobbed off.
Ok MS nurse is very anti it because I’m about to start on rebif as I had a bad reaction to Copaxone she doesn’t think rebif and LDN is a good mix She won’t do a letter because of this, I have a number of previous letters where it mentions I have MS not sure if these will suffice.
Many people now combine DMD’s together with ldn, so you can safely take both if you wish. I believe ldn is well worth trying, but miracles are still rather rare and best keep your expectations in check.
One of those letters should be fine, but sure an online provider will confirm for you.
I’m interested in this too. Do you always have to get it on private prescription or is it a postcode/GP lottery?
Your GP can prescribe on the NHS if they consider it is in your best interest, so no harm in taking along the information pack and asking.
http://www.ldnresearchtrust.org/sites/default/files/LDN%20Information%20Pack%281%29.pdf
I have not tried LDN but i am on rebif.
I know some people combine the two and have done well but i just wanted to ask…
As you have had a bad reaction to copaxone…do you think it is a good idea to start rebif and ldn at the same time?
Should you not start rebif first and see how you react to it and then add the ldn later?
It will be difficult if one of them does not suit you to know which is causing the problem. (just my thoughts)
good luck
Teresa.x
Hi Teresa,
I’m on both Rebif and LDN. My advice is to start the Rebif first. Give it a chance to stop the relapses and then add LDN. I haven’t found that LDN stops my relapses and got badly affected in 09, when due to moving here, I ran out of Rebif.
After 2 weeks in hospital, my neuro asked for funding for Rebif and so I restarted it and added LDN a bit later - about 3 months.
It’s an awful shame, but the LDN doesn’t seem to work anymore. I had excellent improvements to my bladder and legs, but now, it’s just the same whether I take LDN or not. I stopped it for about 5 months last year and there was no difference on restarting LDN. The upside is, that I’m not worse - so that’s a good thing.
Yes my MS nurse made me promise not to start taking LDN privately as I’m due to start rebif injections on Friday and she has said that it will be difficult to monitor my reactions if I introduce LDN into the equation. I’m due to start a contract of 3 months work on Monday and my mobility is causing me great concern so I just wanted to try something that may have some benifit to get me through. I understand the concern from MS nurse about monitoring my reaction to rebif but I’m desperate to try something that may give me some improvement. Or am I just clutching at straws?
There is no right or wrong answer here Louie. It is just a matter of personal choice.
I was quite ill with my ms at diagnosis. I was put on rebif very quickly because my balance issues were so bad i couldn’t stand for more than 4 seconds. Once the rebif kicked in i have done really well on it and my ms is pretty stable and mild now.
I considered LDN but as my ms is not causing me many problems i decided not to rock the boat and stay as i am for now. As i progress i might decide to try it at a later date.
LDN can have side effects as well as rebif. It can take a while to get the dosage right with LDN. I personally would not like to start LDN until i knew the rebif was suiting me first.
There is going to be nothing that gives you the amazing improvement in mobility in such a short period of time.
Please remember that the dmd’s are proven to reduce relapses in severity/frequency but at the moment LDN is not a proven/trialled treatment.
Lapreguiceira - hi hun! I’ve not been on here a lot lately so not seen you on here for a while. I hope you are doing ok at the moment? I agree that there should be a good gap between starting the two meds and that the rebif should be the priority. I am adding you to my buddies list as it’s good to know someone who has been on rebif quite a while and also on LDN in case i decide i want to try it later. I might need to pick your brain!
My ms does not affect my legs or bladder and i am lucky the rebif is working well on its own. I am sorry the LDN has stopped working for you but am glad the rebif continues to keep your ms pretty stable.
Good luck Louie - whatever you decide to do.
best wishes
Teresa.x
I have been taking LDN for 5 years. In those 5 years I have progressed to secondary progressive and now need a wheelchair full time. LDN has done nothing for me. My GP refused to let me have it on the NHS so I had to pay for the prescription and drug privately. Postcode lottery if you live in Norwich. Because I am now secondary progressive I am considered too far gone to be on any DMDs so I am now left to rot basically. I hate this ?ucking disease. Tracy
This is of course if you can’t get a prescription from your GP.
E-med is the best way to get a prescription, after the first one the cost is £15 every 3 months. LDN costs £15 per month and the pharmacy get all repeat pescriptions.
If you want to get a prescription over the internet. If you contact www.e-med.co.uk there is a £20 joining fee and its £15 every prescription that lasts 3 months.
G
Hi I started LDN two weeks ago and I’m also taking Avonex and have had no problems. I have been on Avonex for a year now and like other posters have said, it doesn’t seem a good idea to start LDN until you have got used to the rebif. I get my prescription privately through a web site called e-med and I just sent them a photo of a letter from my neurologist about my MS that I had and that was sufficient as proof of my MS. I noticed a reduction in my neuropathic pain almost immediately and am feeling less fatigued and starting to feel less bladder urgency problems. It has had no effect on my mobility, vision or speech & cognition problems(yet?) However I’m finding my sleep is disrupted. Hope this helps. Penny
Penny, A tip, l learnt from the good folk on here, is to take you LDN earlier in the evening - to give it chance to do its ‘bit’ - before you go to bed. l take mine at 7.30pm - and l got to bed at 11’ish.
Thank you for that tip Spacejacket, I will try that. : )
I take my LDN around 9pm or after it everynight - its doing me no harm so i’ll stick with it - i take copaxone as well
Ok had my first rebif injection earlier today and as yet no side affects, will give rebif time to get in my system before I try LDN. Has anyone experienced an improvement in day to day symptoms other than reduced relapses on rebif?