PMR and LDN

[Marek1]

Hi Everyone , in my constant and ongoing battle with feeling awful with PMR and pred side effects, can I ask the following question ? Has anyone used LDN as an overlapping treatment to Pred for PMR./ Also can LDN be prescribed in the UK . Thank you Marek

[DorsetLady PMRGCAuk volunteer]

Now you have asked, you can see related posts.

As for getting it prescribed in UK - unlikely see this - from Hansard [albeit a few years ago]

The reason MHRA has not looked into licensing LDN is that it has not received any application or evidence to support it, which means LDN is currently unlicensed. That does not mean that it is necessarily unsafe; it is just that a licence for its use in this country does not exist. The current position is that when a patient needs a medicine an appropriate licensed product should be used. If it is not available, doctors can prescribe a different licensed medicine if they think that it will do the job. If neither of those options is available, an unlicensed medicine may be considered. LDN currently falls into that last bracket. As it involves a significantly lower dose than the licensed form of naltrexone, and as it is untested, it is regarded as an unlicensed medicine.

[Marek1 in reply to DorsetLady]

Thanks Dorset lady

[PMRpro Ambassador]

As far as I know, only privately, There are (I think) 2 compounding chemists in the UK who will make it up and ship it to you once you have a private script.

My daughter was using it, not sure if she still is, and used this website I think to find a doctor who would prescribe it privately for her. In theory any doctor can prescribe it as a private prescription - in practice it is harder than that.

ldnresearchtrust.org/how-do...

She told me there were lots of PMR patients on the message boards she frequented.

[Marek1 in reply to PMRpro]

brilliant thanks

[Carnivoreyogi]

When I was first diagnosed I did go on LDN (5mg I think) in the hopes that it would help reduce the inflammation and help me get off prednisone a bit sooner. It didn't help alas. In Canada LDN does seem to be used quite often for inflammatory/autoimmune conditions, especially lupus, MS, fibromyalgia. It's worth a try if you can find someone to prescribe it for you. Good luck!

[Marek1 in reply to Carnivoreyogi]

Thank you