Wait a couple of days

[tracesoflove]

As I tapered, old "pre-PMR" pains were uncovered. I took an occasional Tylenol for those. Eventually I was able to taper to zero Pred. with the help of Low Dose Naltrexone (LDN), which must come from a compounding pharmacy. Not many doctors are familiar with this treatment--yet. All I can say is that it worked for me and there are no side-effects. You can quit at any time. Fortunately I only had PMR for 19 months and am now in remission. Stay with this group--they are very helpful.

[PMRpro Ambassador]

Good to hear - but you are the first person to report it having been successful. I'd love to hear more experience with it.

[Koalajane in reply to PMRpro]

and I don’t believe it is easy to obtain in U K

[PMRpro Ambassador in reply to Koalajane]

I think there is one compounding chemist in Edinburgh! And one doctor who might provide it (private so at a price) in mid-Wales ...

[Sophiestree in reply to PMRpro]

I have never heard of it, but found this

harpalclinic.co.uk/function...

[PMRpro Ambassador in reply to Sophiestree]

Sarah Mackie and I discussed it a few years ago - it is something that comes up at intervals. She has looked into it and didn't consider it validated by any work she was able to find. It is unlikely to be approved/used in the mainstream healthcare systems until reliable controlled results provide some foundation for clinical trials - a requisite for funding in most systems. I couldn't afford that in the current climate and I'm pretty comfortably off. All too many patients aren't.

[tracesoflove in reply to PMRpro]

ldnresearchtrust.org site for trial results with autoimmune diseases is one place to start to learn the many uses of it and how it works. Naturopathic physicians are the ones prescribing it for now and not covered under insurance --yet.

[Hidden]

May I ask, are you a lady or man ? Men seem to fair so much better getting off Pred than many woman do. My brother in-law is a prime example....less than a year for him and he's still good.

[SusanEleven in reply to Hidden]

My mother’s male neighbor as well. Ten months from start to finish with his PMR and now over a decade has passed and he’s still good.

[Hidden in reply to SusanEleven]

men are so lucky

[tracesoflove in reply to Hidden]

I am a woman. I only know how LDN worked on a lower dose of Prednisone, as I discovered it when I was already on 5mg. After 4-5 months I tapered to zero. For a 40 day oral liquid suspension, I paid $58.00 U.S. plus the cost to see the Naturopath Physician who ordered it through the compounding pharmacy. I hope someday soon it will be covered by insurance.

[Hidden in reply to tracesoflove]

Well done

[Purpleprimate]

So from what you said LDN worked for you? It has been mentioned on this forum from time to time, but I'm thinking if it really did have a positive effect everyone would be shouting about it?

Thanks.