how can i be perscribed LDN in the uk?

burntsienna · Newbie Joined: Feb 21, 2007 Posts: 5

The only helpful info I can find is American, and from my experience, we often have to fight for years to get drugs here in the uk that are readily available in the u.s. partially because of money and the national healthcare system, and partially because of over caution and scepticism.

the uk ms society's page on LDN is their typical unhelpful 'sit on the fence' stance of 'some people say it's good, but some people don't and we just don't know enough, so you'd better not.'

I was diagnosed in the u.s. in '96 and imediately put on avonex even before the dx was definate. when i emigrated here to the uk later that year, they took me off of it and wouldn't give it to me because "well, there's just not enough known about it and it's too expensive", whereas now it's accepted by the med field here. i was put back on avonex in '99 and involved in big political campaigns in 2000 to get the drug more widely available here.

(btw, i came off avonex several years ago b/c of my needle phobia and being unable to tollerate the side effects)

so now, after everything i've read, LDN seems like it would be a very very good option for me, but i'm anticipating problems getting it here in the uk (even though it's not expensive enough for the post code lottery to be a big problem.)

i see my MS nurse next monday. what do i do? Shocked

burntsienna · Newbie Joined: Feb 21, 2007 Posts: 5

sorry. i've now found and read the sticky post about this. sorry, i'm a newbie here.

it looks like my chances of getting it in the uk aren't good. Sad

HarryZ · Posted: Thu Mar 08, 2007 8:00 am Post subject: Re: oops

Try and contact Dr. Bob Lawrence in the UK...he has MS and also uses LDN. He is involved in promoting LDN in the UK as well.

The last address I had for him was that he was living in West Glamorgam. A couple of years ago, Dr. Lawrence was so swamped with patients trying to get LDN prescribed that he could not take on anyone else.

Good luck.

Harry

Andy · Posted: Wed Mar 14, 2007 3:57 pm Post subject: LDN in the UK

Hi, I live in the UK and have been on LDN for about 2and a half years now and the way I got it was firstly getting it from America for about 6 months then realising I could get it from the UK, I wrote a letter to the Prime Minister and the Health Minister at that time requesting that I be allowed LDN through the NHS, the letters I got back from both of them were fantastic, they were just the ammunition I needed to show my Doctor who on seeing these letters could not refuse me a script for LDN.

I do not have any reason to stop taking the 3mg caps and I feel that the LDN has slowed if not halted the progression of the MS, by the way I was dx with PPMS in 1995 and although I need 2 sticks to be able to walk I still manage to have my vacations and drive a car (with hand controls fitted)

Suggest you like me you write to the people at the top of the tree. Very Happy

Reg · Newbie Joined: May 09, 2007 Posts: 1

I get mine on the NHS thanks to my open minded GP, but liquid ldn is easily available privately for £15 per month.
Incidentally, the department of health have confirmed that there is no reason why a GP cannot prescribe ldn if they consider it is in your best interest as a patient.
Take a look at the information on www.ldnresearchtrust.org and see what you think.