Low Dose Naltrexone anyone (LDL)

[Allsgrandso]

This was mentioned to me as a possible help as I’m tapering... I’ve googled it a bit but then thought, hold on a minute 🤔 if anyone knows anything about it for PMR you guys will... from what I can gather though it’s good for pain but sure that’s not going to do anything for inflammation so how can it be any good?? (Thinking out loud here)

[PMRpro Ambassador]

Go to the top right of the page (on a computer at least) and you will find the Search PMRGCAuk box. Type LDN in it and all the previous posts will come up. There are plenty.

I have discussed it with one of the top PMR/GCA rheumies in the uK and she said they have looked at the evidence and come to the conclusion that, most of the time, it is as it sounds: too good to be true. That is the UK of course - it is occasionally offered by GPs in Norway or Sweden - not sure which now, the lady who was put on it reported it a long time ago now (not sure it was this forum). She never reported back.

[Allsgrandso in reply to PMRpro]

Thanks I had a wee search alright but it searches the whole HealthUnlocked not just the Pmr/Gca forum. Maybe I need to be on a laptop 👍

[PMRpro Ambassador in reply to Allsgrandso]

Hmmm - I'd have thought you could narrow the search. Certainly cuts it down if you type LDN in PMR into the search box - I've just tried it. A few stray other things but mostly ours.

[Hidden in reply to PMRpro]

Sorry search then filter using "by community'

[Hidden in reply to Allsgrandso]

And there's an ldn research trust forum. Don't know if it's the same thing.

[jinasc]

LDN cropped up many years ago and we looked into it. It was developed by Stanford University in the USA. You can go to the website for Stanford and read why it was developed and for what original purpose. I think, if I remember correctly, it was developed when they were looking for a cure and/or treatment for HIV in the early days.

LDN is an alternative treatment for Autoimmune Diseases. Low Dose Naltrexone is widely prescribed in the UK as an off-label (unlicensed) treatment for Autoimmune diseases.

The above statement is on the web and I sincerely doubt it is widely prescribed, but I could be wrong, it is also supposed to help with Fibromyalgia. In fact when I read it it seems to help every auto-immune illness. BUT THAT IS JUST HOW I READ IT. I could be very, very wrong.

I know it can be bought over the internet (Amazon) but I would never ever buy any drug over the net you just do not know where or who made it.

There were, at that time, only two chemists in the UK who would supply it and you had to talk your GP into writing a prescription for it.

Two people managed to do this, they had to sign waver papers, one said it worked and the other said it was useless.

As an aside on another forum, we were advised that New Zealand and the NZ Health Authorities had found a cure............we could not believe this as we heard nothing. We emailed the Health Authorities in NZ, yes we were correct, they knew nothing about it and lo and behold that website page disappeared.

You should always check with a pharmacist............golden rule even when buying OTC or issued with a new prescription. They know which and what is compatible with what you are taking and they are the only people..............not GPs etc.

Pharmacists - they are your best friend so stick with the same one and make a new friend.

[Allsgrandso in reply to jinasc]

Wow thanks for taking the time for such a well informed reply jinasc 🙏 I’m just looking it up and 100% agree with you re pharmacist being my first port of call. I’m really lucky, have an excellent one thank you x

[SheffieldJane]

I must be barking up the wrong tree. When I googled it the information was that it was used to treat alcohol or opioid dependency, even heroin addiction. Nothing at all about its uses for steroid tapering or autoimmune diseases.

[PMRpro Ambassador in reply to SheffieldJane]

That is the only use it is approved for in the UK.

[SheffieldJane in reply to PMRpro]

What a wonder drug hmmm!🤨

[jinasc in reply to SheffieldJane]

Any drug that someone uses the word 'wonder', immediately the hairs stand up on the back of my neck. I am an old cynic.................

[PMRpro Ambassador in reply to SheffieldJane]

Yes - like jinasc, the more things a miracle drug is claimed to be effective for, the less faith I have that it does ANYTHING!!! But when people have to pay a fair amount or go to great inconvenience to get hold of something - it seems to have a greater placebo effect...

[SusanEleven in reply to SheffieldJane]

That is what it’s used for at regular doses. My understanding is that low dose treatment is 1/10th the regular dose and I’ve read about an off-label use for chronic fatigue/ME. It came up with one of my daughter’s doctors. She’s been diagnosed with CF/ME and we’re reesrching to see if there is anything that might help her have a life again.

Until I got PMR I didn’t truly understand her crushing fatigue.

[SheffieldJane in reply to SusanEleven]

I see. I cannot begin to comprehend how devastating your daughter’s illness is for her and for you her mum. I have no doubt that the stress contributed to your own disease.

[Alliand in reply to SheffieldJane]

Dear Jane, You are right; it is used in ERs and by EMTs to reverse opiate overdose; now it is in a drug called Suboxone where it it is combined with a very strong opiate which helps addicts to opiates withdraw; they get the painkiller, but cannot overdose; the dose of Suboxone is reduced gradually until hopefully they need very little or none at all; I have recently seen it as an ingredient in a new prescription weight loss drug; publicity for prescribed drugs is rampant on US TV!

I have not heard of it having a place in autoimmune medicine though.

[SheffieldJane in reply to Alliand]

Thanks for the info. It doesn’t explain the rationale for giving it to Allsgrandso does it.