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Please help my GP won't prescribe LDN

My GP has refused to prescribe LDN because she says It needs longer trials The study results are conflicting How the results are measured is questionable We do not know what dose to use We are not sure yet in which patients and when to use it Well yes ok I told her there was no clear evidence. BUT my point is that some of you guys are on it with positive results. So my plan is to ask you to post your positive experiences so that I can show them to my GP to persuade her to prescribe. Patient experience and all that after all we are the experts not our GPs - mine readily told me she knew very little about MS. My attitude is that it might help, might not but I would like to take the chance. It won’t kill me will it? So ok I might get nasty side effects but I’m a big girl and can cope! If she still doesn’t prescribe I will consider getting it privately. However i would prefer not to spend my hard earned cash on it when it could go towards a holiday instead. I might even change GPs as if she won’t prescribe LDN i don’t think I’ll have a chance for sativinex should I think I need it in the future. How many of your GPs or neuros prescribe? So my friends please please give me your positive slant Hugs Min xx

Hi Min,

I don’t think your experiences are at all unusual. I don’t think many people get LDN on the National Health. My GP was willing but the — I can’t remember what it’s called — the area health something or other, wouldn’t let him prescribe.

If you are happy with the GP otherwise I wouldn’t change because you would probably not get it from the new one either.

Jane

Hi Min Mine wouldn’t either. I went armed with the info from the LDN research trust but she contacted my MS specialist and on his say so she refused. Therefore, I went down the E- med route and got mine privately. Good luck with your efforts to persuade her otherwise. I hope you get somewhere with that. As yet, I cannot give any feedback of a positive nature as I have not been taking it for very long. One thing, if you do get it, increase your dosage very slowly. It exacerbated all my MS symptoms especially bladder problems! My poor balance got poorer and I ended up on my bum on the steps of a hair salon. Very embarrassing! Anyway, hth, Teresa

Hi Min,

my husband takes LDN now for over 2 years. Our GP told him to ask Consultant to prescribe it. He also said no, but he asked us, whether LDN helped. Well, we couldn’t really answer that question, because my husband started taking LDN about 2 months after he was diagnosed. All we could say was that the MS hadn’t got worse So we decided to stop taking LDN, and after 3 days my husband was feeling really bad. So we started again. Next appointment with consultant is in January 2013 and then we can tell him what happened without LDN. But I still doubt, that he will prescribe it. They all are making sure, that we use the expensive drugs and also are backing themselves up, with all this compensation stuff going on

Hope you can get it from your GP

Gitte xxx

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 £17 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.

From the LDN Trust website

Then, I was thrilled when Pharmacist Stephen Dickson from Glasgow phoned me; we had a very lengthy chat. Stephen was already aware of our plight to get LDN dispensed at an affordable price in the UK; he has been reading everything he can find on the net regarding LDN and wants to help in anyway he can. Thank you Stephen.

Stephen has done his research, and he can dispense LDN in liquid form; the shelf life is 28 days at room temperature and 56 days if kept refrigerated. This is such good news.

As far as I am aware, Stephen is the first Pharmacist in the UK to compound LDN in this form of Liquid Suspension and dispense throughout the UK.

Having the LDN in liquid eliminates fillers! It gets into the system rapidly and is inexpensive. One month’s supply delivered to your door is just £15.00, with no hidden extras; you even get a £1 measuring syringe for free.

I have tried the liquid LDN myself. It has a cherry flavor with a slightly bitter aftertaste, which went after a drink. I couldn’t notice any difference between the liquid and capsule (NOTE sorry tastes horrible like medicine euk! George).

Note, you have to ask you’re prescribing GP to write “naltrexone solution” or “naltrexone liquid.”

All you have to do is send a prescription for the LDN to Paula, who is the Manager, Home Delivery Pharmacy online services.

To use this service you need to register, which is free! Everything has been made so easy; you can either register on the net at www.delivermyprescription.co.uk or phone free on 0141 647 8032 and registration can be completed with the assistance of Paula. If you have any questions at all about this service and how it can work for you, please don’t hesitate to phone Paula, who will be only too happy to assist.

With this service you never have to worry about ordering a repeat prescription for ANY of the NHS medication you take, this is all taken care of for you. No more waiting for prescriptions to be filled as they are delivered monthly to your door at no cost. For those of us that find going out difficult, what could be better? You are notified when your medication has been sent and what day you should expect delivery. In the unlikely event of your parcel not arriving, phone Paula. She will arrange for another order to be dispatched and she will track down the missing parcel.

All NHS patients need to sign a form, regardless of exemption/pre-payment status.

Liquid I find far superior you can finate your dosage, start at say 1ml and increase by 0.5ml every fortnight till you reach 4ml. You know when you reach your dosage, you feel extra tired one day perhaps some symptoms re-appear, just drop to the dosage as the one before.

George

You can print off a sheaf of positive experiences, but that kind of anecdotal evidence is exactly not the kind of evidence your GP looking for, and that her training demands that she look for. If your GP is a good one, please don’t fall out over this, or try to change GPs until you have evidence to show that a new one would take a different view. Alison x

Alison has hit the nail on the head.

Good GP’s are hard to find. They are governed and bound by many rules and regulations and most of them will be looking for evidence taken from scientific trials and research before prescribing something like LDN (for example).

Please also take into consideration that if you did change GP’s they wouldn’t ‘know’ your history like your current one does. They’ll have your records but it won’t be quite the same until you get to know them. They won’t necessarily be up for prescribing LDN either.

Good luck Min with whatever you decide

Debbie xx

Hi Min Friends on the PPMS thread had spoken about LDN, try beccygreeneyes as she has just started using it, must be about day 9-10. Take care Mike :slight_smile:

I get it on the NHS at first my own GP said don’t sue if it goes wrong I offered to provide a letter backing this up but she said no. Because my GP is part of a practice sometimes i would get her collegues to prescribe with no problem however last month the one gp i dont go to was signing off prescriptions and said there was the 3mg equivelent on the system and to try that as i was already on 2mg the system they use will only prescribe authorised drugs before this i had to get it hand written must speak to Linda at the LDN trust to see if she has heard of this, and if this is the case maybe try this dose? I have and feel a bit better on it so my experience is it works.

Why is it are GP’s are happy to push meds on us that are not even licensed for ms use and very expensive. Drugs suitable for epilepsy/bi-polar/Parkinsons- even chemo type drugs. l even had a neuro prescibe me a drug for HIV!! - everyone of them with horrendous side-effects - and l had to keep having blood tests to monitor my kidney/liver function.

Then when l found LDN - couldn’t get it on nhs prescription [even though my GP said she would certainly take it if she had ms] For me it works - makes a big difference to my life - and in 4yrs l have not progressed. When l heard about Sativex - l did get it on private prescription for a while - it helped so much with muscle spasms/spasticity - when it became licensed for ms use June 2010 - my GP consulted a neuro who agreed to me having it. So for two years l was getting Sativex on nhs presciption. Then 2 weeks ago - another GP in the practise has stopped me having it. My district nurse knows how much it has helped and asked a GP - at another practise her opinion. She printed off some info from the county area prescribing committee.Drug Positioning Statement for Sativex. stating that – Those currently receiving Sativex should have the option to continue until they and their consultant consider it appropiate to stop --Also it states that after a 5week withdrawal study - no withdrawal syndrome was evident but worsening of spasticity symptoms and functioning ability were seen with withdrawal of Sativex. l have written to the head of my Gp practise saying all this - she has replied saying she is 'communicating with the Associate Director in Medicine Management at the county PCT - and will contact me when she has further advice from them.

The point l was trying to make was - in 30yrs of MS - and all the ghastly meds l have tried that just made my condition worse - l find two things that really do HELP – l know they are not a cure - but they have made my life easier - and that is the main thing - and with no side-effects. And why oh why do the medical profession who are supposed to care for us - deny us this help.

F.

Hi Min,

As others have already said, LDN is not routinely available on the NHS, because it’s not NICE-approved. A few GPs may be willing to stick their necks out and prescribe, but it’s not your right as a patient to receive it, and most GPs won’t do it.

I’m only chipping in, because you also mention Sativex. Don’t assume everybody else is getting it, and you’ll be the only one that isn’t. It isn’t widely prescribed on the NHS either. My doc hadn’t even heard of it, and had to look it up in the formulary. Then she said: “Oh, we don’t do it”. A lot of trusts have, as a policy decision, that they don’t prescribe it.

Tina

ggood said it right.

Wb