Low Dose Naltrexone?

[Neck680]

Hi all-I am 3.5 years with PMR in the U.S., now at 7mg pred using Dead Slow Method on my way to 6.5.

My legs are quite painful these days and Dr prescribed low dose Naltrexone. Does anyone have experience with it? Presumably it helps with pain, inflammation and helps reduce need for pred.

The med was originally used for blocking opioid use but at this very low dose it addresses different issues.

Thanks for any feedback, as always.

[DorsetLady PMRGCAuk volunteer]

It has been discussed on here previously - have a look at related posts - but doesn’t seem to have particularly spectacular results.

It isn’t widely used for PMR, certainly not in UK, most queries about it seem to come from your side of the pond.

[Neck680 in reply to DorsetLady]

Thanks DorsetLady- I will likely try it anyway and report back after a fair trial.

[DorsetLady PMRGCAuk volunteer in reply to Neck680]

Please do

[PMRpro Ambassador]

Someone in Norway told us their doctor had started her on it and she would report back - she never did. You'd think if it had a miraculous effect we'd have heard wouldn't you?

[Neck680 in reply to PMRpro]

I’ll try to do better!

[PMRpro Ambassador in reply to Neck680]

Forgot to add - Prof Sarah Mackie did the reading - wasn't impressed with the claims.

[jinasc]

Two people I know, tried it once the got their GP's to prescribe it privately. It did not work on either of them. It is not licenced for use in PMR and/or GCA in the UK.

LDN was developed by Stanford University in the USA for use in HIV. Quite a bit of info on the Stanford site.

[Neck680 in reply to jinasc]

Thanks for that info Jinasc. I will search that site.

[piglette]

There was a discussion on the Patient forum a while back about Naltrexone and PMR.patient.info/forums/discuss...

[Neck680 in reply to piglette]

Thanks Piglette for this immensely encouraging post. People are getting relief from it! Yay. I will try it and report back.