LDN-low dose naltrexone- Has anyone tried it?....if so opinions please!

[bam1993]

Hello .....Has anyone tried this drug, and if so please could you let me know how it is going, I have decided to give it a go (I have a friend with MS who has been on it for 6 years-and she says it really helps her) All responses-good or bad- appreciated!!

[Slowmo]

Not tried it, but did sign a petition posted on here recently - something to do with Chris Steele (Dr off This Morning). Do let us know if you try it please, and can you tell me - do you have to buy this privately? as the petition I signed was asking for more clinical trials so I guess it' not readily available?

All the best.

[bam1993]

Thanks for your reply Slowmo-yes it looks like I am going to have to go private,(am awaiting an answer from my GP-but am doubtful)...... but will let you all know how it goes

[Lindasboo]

Hello I was diagnosed 10 yrs ago with secondary progressive ms. I heard about LDN and asked my neurologist if she would prescribe it. She dismissed me and said that there's no evidence that it can help. However, an other ms sufferer in my area managed to get LDN from an understanding GP. His life is so much better after taking this drug, he feels well and can walk unaided. He went to the same hospital as I to show the neurologist the difference to his health but the neurologists attitude remained the same.

I believe it is given to people with drug addiction so I can't understand why it is not available to anyone who might benefit. If you can get it from you're GP or consultant personally I would try it. Good luck!

Hope this was helpful

[Melinda]

Yes. I have been taking it for a few years now. It was after the last flare up I decided to try it. I had had enough, and had been through hell with Lupus. I had been reading about it for some time. I should say it has not cured me, but I have not had a flare since taking it and have only visited the doctor and hospital for routine appointments. I have more energy and am much steadier on my feet. I haven't had a fall for years. It has I believed improved my overall health. It is given to addicts in high doses of 50mg but doctors are reluctant to give low doses of 4.5mg to people who are sick even though it is a proven safe drug. I buy mine privately.

[bam1993]

Hi Melinda, Thanks for your encouraging reply, I realise that LDN will not be a cure, but, where I am with my meds at the moment is:- I had to stop taking Methotrexate due to the fact it had damaged my liver at the time I was advised (by rheumy) to stop taking Quinorix too....but am now back on 200 per day...also take Pred...5mg or 10mg daily depending on if I at work-but struggle to cope on this dose (my aim is to get off the Pred-am sure it is making cholesterol/blood pressure etc high)....Rheumy now saying my bloods are showing liver has gone back and is willing for me to try Aza or Cellcept, but I feel I am at the ideal time to try LDN...and if I don't try it, I will never know if it would have helped me lead an 'almost normal' life!!! I see that you say you have been on it for some years, how long were you on LDN until you saw an improvement....and do you still take other meds i.e Pred or Quinorix?? I think I will have to get it privately-and have found a way to do that is not too expensive. Thanks again for your reply, and am feeling hopeful!x

[Melinda]

Sorry It has taken a time to reply. I spoke to a private doctor at length over the phone before I could get a prescription for LDN. She said I was okay to take it. I am currently taking hydroxychloroquine and 5mg of prednisolone which I wish to decrease. I do know you cannot take certain painkillers with LDN and I'm careful with alcohol. As it's been so long since I started taking it, it's hard to say when I first noticed an improvement. I can say my quality of life has improved. I haven't been really sick for years. I wish I'd have taken it when first diagnosed before any damage to my joints.

[bam1993]

Thank you so much for your reply!!...I am still hopeful that it will help me, and definitely intend to try it-even if I do have to go private-I will never know unless I try-my main aim is to get off the Pred-and just have it as standby for emergencies.

Do you know about the Parliamentary Meeting on 26th Feb (Nia Griffith MP) where all of the MP's have been invited to hear about LDN and how it could help the NHS and so many patients??? I have written to my MP to ask him to attend (as has my boyfriend, and my parents!!) I heard about this from LDN Now! and if you have not already asked your MP - I have a template letter that you could forward, if you wish...I could email it to you privately? You may already know about it, but if not, the more MP's there the better, because, I think that people just don't know about this treatment. Thanks again for replying. Julie x