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.

Thanks. Interested to hear your experience with LDN. I am on 20 mg/day prednisone since being diagnosed with PMR on Feb 3, 2023.

While it has pain from my PMR is bearable, it has not gone away, so the prednisone may need to be increased. But of course this increases the risk of side effects.

Alternatives like LDN that could reduce my need for prednisone are therefore of great interest.

REPLY

I will post my experiences, probably starting next week. Meanwhile, have you tried taking part of your dose at 2 AM? That cut my pain to almost nothing. Apparently doing that heads off the cytokine rush that happens from 4-4:30, or so I read.

REPLY

Thanks for this suggestion. I'll try the 2 am idea. The pain is worse in the morning. I've been taking the 20 mg of prednisone at 8:30 am.

Any suggestions on what proportion of the prednisone to take at 2 am?

REPLY

I take 5 mg at 2, or whenever I wake up between 1-3. I started doing it when I was at 17.5 and now continue at 12.5 and still no pain when I wake.

REPLY

Hi, I've never heard of LDN. Are you able to share some information on this?

REPLY
@marmak

Hi, I've never heard of LDN. Are you able to share some information on this?

Jump to this post

For background on LDN, this is a good source. There's a lot to learn once you start!
https://www.lowdosenaltrexone.org/index.html

REPLY
@redboat

Thanks for this suggestion. I'll try the 2 am idea. The pain is worse in the morning. I've been taking the 20 mg of prednisone at 8:30 am.

Any suggestions on what proportion of the prednisone to take at 2 am?

Jump to this post

REPLY

"In one study, administering 5 mg or 7.5 mg of prednisolone at 2:00 a.m. daily showed significant improvements in morning stiffness, joint pain... " . There you go!

Note, though, that prednisone has to be converted by the liver to prednisolone--so I guess you wouldn't want to take it too late in the early AM. Since I seem to wake about 2 anyway, I save a lot by not needing time-release tablets.

REPLY

If you are willing to share, and you have the data, it would be interesting to know your CRP measurements before you start, and see how the LDN impacts them after. I understand this is personal data that not everyone wants to post on the internet. Thanks for considering it.

PS After an "interesting" experience generated by severe inflammation, my rheumatologist and the ER doctors raised my prednisone dosage to 60 mg/day. I've actually only been taking 40 mg/day since it seems to be adequate. I was originally diagnosed on Feb 3, 2023, and had been taking 20 mg/day since that time, but this episode, which only occurred a couple days ago, made the doctors think twice. MRI and close examination by experts have confirmed this is not GCA, just a very severe case of PMR.

REPLY

Thanks for asking,@redboat. I am not being tested regularly. No CRP number since first diagnosis in early December. Also, I will be using the prednisone while trying to cut it back with LDN--so any numbers would be meaningless. I think what I'll learn will be subjective, and it will take several weeks before anything becomes clear.

REPLY
Please sign in or register to post a reply.