LDN for autoimmune diseases

[audrey105]

Have you tried LDN It's worth looking into.

Positive results for all autoimmune diseases.

There is a website and new book out under that title. It is working for me in helping me reduce the prednisone and finally find relief. Do your research

[PMRpro Ambassador]

I wrote in response to this suggestion somewhere else. There is not yet any good or reliable evidence it works - and it is probably difficult to get the right dose.

This paper is fairly easy to read, certain sections that are of interest to us as patients are very understandable:

The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain

by Jarred Younger,corresponding author Luke Parkitny, and David McLain

ncbi.nlm.nih.gov/pmc/articl...

says:

"As a daily oral therapy, LDN is inexpensive and well-tolerated. Despite initial promise of efficacy, the use of LDN for chronic disorders is still highly experimental. Published trials have low sample sizes, and few replications have been performed."

They also discuss the disadvantages of using LDN - not least, as they say, the cost.

It is something I would be interested to see trialled as a potential steroid sparer - but I don't think there is enough evidence to say "Positive results for all autoimmune diseases." as that is, so far, by no means the truth - fibromyalgia, Crohn's disease, MS and complex regional pain syndrome, possibly, not other a/i disorders.

[audrey105 in reply to PMRpro]

I have been taking LDN for over a month. Started at 1.5 mg and now at 3 mg. And will soon be increasing to 4.5 the max. I have noticed a considerable difference and for the first time in 2+ years have been able to drop below 10 mg of prednizone with no problems. Besides that it has taken away the fatigue and I just feel all around better

I have read about others on line who have also had positive results. The cost is about 80.00 a month and the compounding pharmacy I use has just begun accepting insurance for it.

I have had no side effects. There is a website with a great deal of information on it. if you google LDN dudley Delaney you will find it.

[PMRpro Ambassador in reply to audrey105]

$80 I imagine you mean?

[SusanEleven in reply to audrey105]

Keep us posted on your progress!

[audrey105 in reply to SusanEleven]

Will do

[SusanEleven in reply to PMRpro]

I read a bit on this, mostly as part of investigating things that might help my daughter and her diagnosis of chronic fatigue syndrome. Which I think is called ME in the U.K.

Right now my DSNS taper is still progressing well ("don't mess with success") so I'm keeping this back of mind for PMR.

[audrey105 in reply to SusanEleven]

I am in Florida. At first I ordered it from Israel until I found a dr who would write a prescription Both my sons have autoimmune diseases but they are holding off on LDN until they see how I do. 😋 I could never get below 10 mg without a flare and always had fatigue. Not so with the LDN. So far so good.

[jinasc]

We looked into this many years ago............developed by Stanford University for use in HIV and other dependencies. You can read up on it on many websites dealing with auto-immune illnesses.

It is only licensed for use in the UK for MS.

The jury is out on this one and trials would be useful.............however there is no money to be made by big Pharma.........................

[SusanEleven in reply to jinasc]

My rheum doc says (I'm In the US) research $$ here is focused on RA and there's no attention paid to PMR. Sigh.