Anyone else on LDN (Low Dose Naltrexone)? — Scope | Disability forum
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Anyone else on LDN (Low Dose Naltrexone)?

brujah81
brujah81 Member Posts: 56 Courageous
I dont know if if this is the right forum, i struggled finding where to put this.

I am about to go from Oxycontin to LDN (Low Dose Naltrexone https://www.ldnresearchtrust.org/sites/default/files/LDN-2018-Fact%20Sheet-UK-Europe.pdf ) for Fibromyalgia, EDS and ME.

It is a relatively new pain killer medication in the UK and i believe only 10% of doctors have prescribed it and if you have to pay for your prescriptions it can be very expensive up to £250 a month!! if you can get it on NHS prescription and dont have to go private.

Is anyone else on this medication ? , i dont know anyone else in the UK on it and if they are on it for Fibromyalgia or if for another condition.

Kelly x



Comments

  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    edited March 2020
    Hi @brujah81
    I have found some information for The Multiple Sclerosis Society about Low Dose Naltrexone.

    As I'm sure you already have, research using trusted sources like the NHS or NICE and ask lots of questions of the medical professionals.


    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • brujah81
    brujah81 Member Posts: 56 Courageous
    Thank you, i have researched alot of sites, but hadnt seen that one. My GP actually doesnt seem to know much about it and hes a senior partner of the practice! Its relatively new in this country so not many doctors have prescibed it and most people are having to go private but i have managed to get my NHS GP to prescribe it. I am just interested in finding anyone else who is on it or interested on going on it.

    Kelly x
  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hi, I have MS and around   15 years ago, I`d read it could help alleviate some MS symptoms.

    I couldn't get it from my GP on script, but my MS nurse wrote a supporting letter for me and like hundreds of others I got it privately through a pharmacy in Scotland. It cost around £25 a month. It`s benefits for me were short lived, so I stopped it.

    I don't know if it is still available. I`ll ask on the MS support group and let you know.

    Pollsx
  • brujah81
    brujah81 Member Posts: 56 Courageous
    You can still get it privately from Dicksons i think.. alot of people on facebook have to do it privately.. its a shame I am so lucky to get it through the NHS but if you have to pay for prescriptions i believe its more than the normal amount; luckily i get  mine free as i have a thyroid condition.

    Kelly x
  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Yep, it is still available on private script from Dicksons in Glasgow. It`s £30 a time.
    Pollsx
  • brujah81
    brujah81 Member Posts: 56 Courageous
    i am so lucky i get it free on nhs prescription
    Kelly x
  • Cress
    Cress Member Posts: 1,012 Pioneering
    A chat with your pharmacist may be helpful. 
  • poppy123456
    poppy123456 Member Posts: 31,224 Disability Gamechanger
    @steku do you need some help with something? I see you're posting the same commenting on a few different threads, which can be seen as spamming.
  • MarkM88
    MarkM88 Member Posts: 3,130 Connected
    @steku do you need some help with something? I see you're posting the same commenting on a few different threads, which can be seen as spamming.
    A few weeks back they posted a comment asking people to send an email if they needed the medication, so I’m guessing they was trying to sell it. 

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