Low Dose Naltrexone and Prednisone for PMR?

Posted by pkalkstein @pkalkstein, Mar 1, 2023

My doctor has prescribed LDN and I will be receiving it soon from a compounding pharmacy. I am tapering prednisone, now at 12.5 (from 20 over 4 months) with no pain, although I can feel that PMR is still active. From what I have read, I plan to take 1.25mg of LDN at night, and 10 mg prednisone in the morning, slowly working the LDN up to 4.5 and the prednisone down as reasonably quickly as I can without a flare. Has anyone tried a similar formula? Any advice would be welcome, and of course I will report developments.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@redboat

After a couple nights with dosing at 2am, and one without, this idea seems like it might be working for me. Thanks very much.

Jump to this post

Good to hear! Keep us updated…

REPLY
@redboat

After a couple nights with dosing at 2am, and one without, this idea seems like it might be working for me. Thanks very much.

Jump to this post

Very happy to hear that! It's still doing a good job for me--no pain in the morning anymore.

REPLY

My LDN tablets came yesterday from CareFirst in NJ. They are 4.5 mg but I am splitting them in 4 as accurately as possible, and starting with about 1.l mg. I am going to take that at bedtime and continue, for now, with 5mg prednisone at 2 AM and the rest of the prednisone dose (now 7.5mg) after breakfast. I don't expect to learn much for a while but have hopes.

REPLY
@pkalkstein

Very happy to hear that! It's still doing a good job for me--no pain in the morning anymore.

Jump to this post

Did the late night dose of predisone again and the pain was minimal in the morning.

But I'm also now on 60 mg/day of prednisone.

The prednisone may be affecting my sleep though. Went to bed at 11 pm,
took 10 mg of prednisone at 12:30 am, another 10 mg at 1:45 am, then woke up at 4:30 am and could not sleep more.

Before PMR, I regularly slept like 8-9 hours. Weirdly, the lack of sleep is not really bothering me that much. It would have killed me before.

REPLY

Oowee--pain free! My first look at LDN has been great. For two nights now I have taken 1.1mg of LDN before bed. Both nights I went quickly to sleep, then woke an hour later (this is typical for me) with a strange feeling: I felt like a kid again, just for an instant. I'm sure the reason for this was that there was not a trace of PMR's effects, no pain, no stiffness. When I woke to take my 2 AM prednisone, I felt just a twinge, but this morning there is almost nothing. It is way too early to draw conclusions about the LDN, but it is exciting to sense that it has promise for at least some of us. As for the vivid LDN dreams I read about--the only dream I can recall is about updating the operating system on my laptop, so...no. More to come, I hope.

REPLY
@pkalkstein

Oowee--pain free! My first look at LDN has been great. For two nights now I have taken 1.1mg of LDN before bed. Both nights I went quickly to sleep, then woke an hour later (this is typical for me) with a strange feeling: I felt like a kid again, just for an instant. I'm sure the reason for this was that there was not a trace of PMR's effects, no pain, no stiffness. When I woke to take my 2 AM prednisone, I felt just a twinge, but this morning there is almost nothing. It is way too early to draw conclusions about the LDN, but it is exciting to sense that it has promise for at least some of us. As for the vivid LDN dreams I read about--the only dream I can recall is about updating the operating system on my laptop, so...no. More to come, I hope.

Jump to this post

Nice to hear it helped.

I did some research earlier on LDN, and even bought "The LDN Book, Vol II". But I could find only find one anecdotal description of LDN for PMR.

So you're doubling my database!

Was getting a prescription hard? I'm in San Francisco.

REPLY

So glad the word is finally getting out about LDN. And Volume 2 of the LDN Book by the LDN Research Trust. I've got to say that the Brits are way ahead of us using this drug. I too was dismayed that there wasn't more about PMR in the book. I gave my copy to my primary in hopes of spreading the word. She is at least receptive. I posted a link on my portal in hopes that my rheumy would learn about it, but nada.

REPLY
@redboat

Nice to hear it helped.

I did some research earlier on LDN, and even bought "The LDN Book, Vol II". But I could find only find one anecdotal description of LDN for PMR.

So you're doubling my database!

Was getting a prescription hard? I'm in San Francisco.

Jump to this post

I have a terrific PCP. He knew of naltrexone for addiction, but not low-dose, and his database showed only 8mg combined with another drug for weight loss. I briefly told him what I know and left him with a pdf from NIH, the gist of which was that LDN was somewhat efficacious against inflammatory diseases and easily tolerated. The latter is the big thing, as no doctor is likely to prescribe a dubious drug that might harm a patient. There is a link to that article somewhere in this forum. I also left him with my choice of compounding pharmacy and he faxed a prescription for 90 tablets of 4.5mg--$46 plus postage. Now that LDN is being used for long covid, more physicians may learn about it.

REPLY
@suetex

So glad the word is finally getting out about LDN. And Volume 2 of the LDN Book by the LDN Research Trust. I've got to say that the Brits are way ahead of us using this drug. I too was dismayed that there wasn't more about PMR in the book. I gave my copy to my primary in hopes of spreading the word. She is at least receptive. I posted a link on my portal in hopes that my rheumy would learn about it, but nada.

Jump to this post

I don't know about the Brits, @suetex. I am on this forum - https://healthunlocked.com/newsfeed - and the two principals seem not to know much about LDN (though they are great on prednisone). I think the big movers in Europe are in Scandinavia and some in Ireland and Wales.
Since we seem to be in a video world, I recommend these videos, especially the one from Norway, to try to educate folks.
https://www.lowdosenaltrexone.org/features.html

REPLY
Please sign in or register to post a reply.