Hiya, I’ve been told today by my MS nurse that my neurologist is happy for me to come off Avonex and start on LDN, (from what I’ve read about it, I think it’s worth trying) but because it’s an “alternative” medication for people with MS, she can’t tell me where to go for a prescription. I’m in Aberdeen, how do I get a prescription for LDN? Thanks Luisa
Most people tend to start on liquid ldn from Dickson’s Chemist in Glasgow - http://www.dicksonchemist.co.uk/Home/Default.aspx. Start on say 1mg and increase by .5 every couple of weeks, or as your body tolerates the stuff. Let me know if you need any help.
Hi there Louisa, If you email the ldnresearchtrust…org they will go through the steps with you, I’ve just done it and am expecting my 1st delivery tomorow, pm me how it goes and I,ll do the same, take care, x Peter
Hi, best thing to do is to join e-med. This costs £20 a year. They will need a letter from a dr confirming you have a diagnosis of ms. For £15 they will give you a prescription for 3 months worth. Best to get it sent to dicksons in Glasgow. For £17.50 a month they will send the Ldn to you. It is quite easy. I tried it for a few months but stopped to try sativex, which I also get privately from emed. Didn’t think I could justify the cost of both! I am also in Aberdeen. Is your nurse Rose Johnston. Can I ask which neuro you are with. I see Dr Coleman. Cheryl
Thanks very much for your replies, they’ve been very useful, Luisa
If your neuro is happy for you to take ldn, then just ask your GP for a prescription. It’s a perfectly legal drug, so the NHS should be your first point of call.
You may be able to get an NHS prescription it just depends on you local health authority, in England that means local PCT not sure how the system works in Scotland. LDN can be very dose critical so unless you wish to do the research to work out how to adjust the dose to suit you it may be worth initially using a doctor experienced in treating MS with LDN to get the dose right first. Probably worth keeping you GP informed about what you are doing even if you do decide to use and LDN specialist at first just out of politeness.
I agree with David. It is wrong to assume that just because your neurologist and the GP are supportive the LDN prescription will follow. My neurologist wrote to my GP asking for the prescription but the GP said (he was very supportive) that the PCT would not accept it. So I’ve been getting the LDN privately but I’m not happy about it. I’ve not posted here before partly because most questions/discussions are around the RRMS and DMDs and I don’t have much knowledge about them. My flares were relatively mild, certainly not disabling but I’m now SPMS and progressing so no conventional drugs for me now either. I’ve been taking the LDN for ten months and have no complaints, I think it is helping. Ironically, if I qualified for DMDs the PCT would be spending considerable amount of money but wouldn’t allow me to have the LDN on the NHS prescription although I’m happy to pay for the drug itself. I just like to say that people on this forum are a great bunch and I’ve been popping in here daily. With regards to the LDN, in the past I read here some heated discussions about it which made me wonder if there is a strong anti-LDN agenda here. But to be honest, there is now huge amount of information about it and anybody considerating it can make an informed choice. And MSers don’t have many choices so anything that can help is worth trying. Best wishes Maryla
Hi, First, I’d like to state that I take LDN. I use if for symptom relief, but not to stop relapses or progression, as there’s no proof that it does this. It can do this, but not in my case, but I would hate to be without my LDN and I would be in a very bad state without Rebif (beta-interferon). The heated discussions tend to come from people who make rather extravagant claims for LDN and MS, without actually having MS itself. Those of us who have a balanced view, at times, disagree with these claims. That’s when the wheels come off, so to speak. There are (apparently) over 300 people on this website who take LDN or LDN+DMD. We do have open minds, but there has to be a balance between the claims that ‘LDN will stop your MS progression’ and ‘LDN doesn’t work’. LDN does work, but in order to gain a full picture, people who are starting it, need to know that it can give horrible side-effects in some people and for others, work like a very good DMD. There isn’t a way to tell how it will affect people. I don’t think there is a full-on anti-LDN bias. People are free to discuss this and should be allowed to disagree with the authoritative voice of the evangelists. Discussion is great. We all need to listen to others’ opinions and take on board that LDN can be a miracle drug for some and a great disappointment for others. The main problem for me comes when people say that no one will discuss LDN on the NHS as there’s no money to be made from it and these are generally views that come from the US. The NHS has to pay for the DMDs and doesn’t make money from their prescription and there was a HUGE battle to gain access to the trialled DMDs in the years before 20002. If this view could just be put to bed, once and for all, then maybe the LDN cause can move on. The US has a lot to answer for - in that they can’t understand that not-for-profit medicine is a different world. best wishes, Katrine
Thanks again for the replies - I’ve made an appt with my GP for next week to see if he’ll prescribe the LDN - having just moved to a new practise, don’t know how this will go, but the worst they will say is “no”. I’m so sick of this disease, and the fact that nobody seems to be doing much about it, and I’m not that bad with it. Like I said to somebody the other day, I feel like I’m sliding down a muddy slope, clutching at straws, and I hate it, but I know that things could always be worse, and I’m thankful that they’re not. Luisa