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.

@pkalkstein

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

Jump to this post

And it would be helpful if our medical professionals could read this paper. It's from 2014 but still very useful. It can be downloaded as apdf.
https://link.springer.com/article/10.1007/s10067-014-2517-2

REPLY
@pkalkstein

And it would be helpful if our medical professionals could read this paper. It's from 2014 but still very useful. It can be downloaded as apdf.
https://link.springer.com/article/10.1007/s10067-014-2517-2

Jump to this post

Good paper. There were possible mechanisms discussed for LDN that I was unaware of.

My general thought on LDN for me personally is that it could help me taper off prednisone more quickly and successfully.

And LDN appears to operate with minimal side effects, which is VERY attractive.

I'm generally hearing it can give relief, although if the pain is immense (think multiple broken bones with nausea), it is unlikely to remove it, or even make a major impact.

Since my attack is unfortunately very severe, I'm holding off on pursuing LDN until a later stage of my disease. (Diagnosed Feb 3, 2023.) Some of that is based on triage. For now, dealing with the medical bureaucracy, getting my prednisone dosage set at the correct level, and getting some exercise in each day are taking most of my energy.

I continue to be very interested in your updates on this.

REPLY

I am wondering if you are being helped with the LDN?

REPLY

Now 9 days into LDN use. I have been experimenting and I still do not have a sense of how best to use LDN to speed my prednisone taper (and then use LDN for maintenance). However, this morning I arose with a zero (no pain, no stiffness at all) in my log. Last night I took half of a 4.5mg LDN tab at bedtime, then my usual 5mg of prednisone at 1:30. I followed this with 7.5 mg prednisone after breakfast. I will continue with this regimen and see if I can use it to get down to 10mg of prednisone. The LDN tabs from CareFirst (excellent compounding pharmacy) are quite small but my pill cutter handles them well. More to follow.

REPLY
@pkalkstein

Now 9 days into LDN use. I have been experimenting and I still do not have a sense of how best to use LDN to speed my prednisone taper (and then use LDN for maintenance). However, this morning I arose with a zero (no pain, no stiffness at all) in my log. Last night I took half of a 4.5mg LDN tab at bedtime, then my usual 5mg of prednisone at 1:30. I followed this with 7.5 mg prednisone after breakfast. I will continue with this regimen and see if I can use it to get down to 10mg of prednisone. The LDN tabs from CareFirst (excellent compounding pharmacy) are quite small but my pill cutter handles them well. More to follow.

Jump to this post

Thanks for continuing to describe your LDN experience.

In terms of LDN's impact on the taper, won't it be self-evident from the lack of pain? If regular use of LDN helps you avoid remission - which I read the majority experience - won't that allow you to taper more successfully, and hence lower the total exposure to prednisone?

Or were you hoping LDN would let you speed up the prednisone taper faster than the usual schedule?

Just some thoughts.

It is interesting to see your prednisone schedule; it sounds similar to what I have now adopted:

9 am: ½ total daily dose
6 pm; 1/6 total daily dose
2 am: ⅓ total daily dose

I am trying to balance the desire to avoid morning soreness with prednisone's tendency to cause insomnia.

At my current high total daily dose (60 mg), insomnia becomes a problem. Last night I was able to sleep 7 hours with this regimen, although I did experience a little achiness around 4 am. Weirdly it felt like it was in the chest bones, not the usual shoulder, arms, and hips.

REPLY
@pkalkstein

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.

Jump to this post

This was very helpful. I had tapered down to a low dose 2.5mg prednisone for six months with some stiffness/achiness that was manageable. I went up to 3.75 when it seemed to increase/worsen this winter. After reading your comments I have been that dose at 3-4 am and noticed much improvement. My mornings are much better with this timing.

REPLY

My experience with LDN and PMR is some what unique in that I tried LDN out of despiration because my rheumy was unable to diagnose me. I asked for the script after I read about it and was in two types of pain. The LDN helped (2 days!) my non-moving pain and left me with just the using my muscles pain. I was still on the LDN when I switched docs to one that recognised the PMR and started me on 20mg of methylprenisolone. Once again, after 2 days, no pain. Now pain free and I started to get my life back. This was interrupted, however, by my husband having a major heart attack. Essentially, he died and they wouldn't let him go. Somehow, he did great (the docs called him the miracle man) but I had to be too active. Much more than what was good for me considering my status. My advice to everyone, is take it slowly. Yes, you feel so much better, but just because you can doesn't mean you should. You are probably deconditioned. Make haste slowly. It will go better.

REPLY

This is something I have really learned with AS and now PMR “just because you can doesn't mean you should.” It’s so important to know the difference. Especially, since the expectation is to just do it.

REPLY
@suetex

My experience with LDN and PMR is some what unique in that I tried LDN out of despiration because my rheumy was unable to diagnose me. I asked for the script after I read about it and was in two types of pain. The LDN helped (2 days!) my non-moving pain and left me with just the using my muscles pain. I was still on the LDN when I switched docs to one that recognised the PMR and started me on 20mg of methylprenisolone. Once again, after 2 days, no pain. Now pain free and I started to get my life back. This was interrupted, however, by my husband having a major heart attack. Essentially, he died and they wouldn't let him go. Somehow, he did great (the docs called him the miracle man) but I had to be too active. Much more than what was good for me considering my status. My advice to everyone, is take it slowly. Yes, you feel so much better, but just because you can doesn't mean you should. You are probably deconditioned. Make haste slowly. It will go better.

Jump to this post

" Yes, you feel so much better, but just because you can doesn't mean you should. You are probably deconditioned. Make haste slowly. It will go better."

Excellent easy advice and probably the hardest to follow.
We may feel well, but we are not.
Enjoy the pain free feeling well period. Then make like the tortoise and get back into it slowly.

REPLY
@redboat

Thanks for continuing to describe your LDN experience.

In terms of LDN's impact on the taper, won't it be self-evident from the lack of pain? If regular use of LDN helps you avoid remission - which I read the majority experience - won't that allow you to taper more successfully, and hence lower the total exposure to prednisone?

Or were you hoping LDN would let you speed up the prednisone taper faster than the usual schedule?

Just some thoughts.

It is interesting to see your prednisone schedule; it sounds similar to what I have now adopted:

9 am: ½ total daily dose
6 pm; 1/6 total daily dose
2 am: ⅓ total daily dose

I am trying to balance the desire to avoid morning soreness with prednisone's tendency to cause insomnia.

At my current high total daily dose (60 mg), insomnia becomes a problem. Last night I was able to sleep 7 hours with this regimen, although I did experience a little achiness around 4 am. Weirdly it felt like it was in the chest bones, not the usual shoulder, arms, and hips.

Jump to this post

Thanks for the good questions @redboat. Indeed, I am "hoping LDN would let [me] speed up the prednisone taper faster than the usual schedule." Having been on prednisone for four months, I can't just stop it, as the effects would be drastic. But if LDN can take over some of the pain relief, I can taper more readily. Ultimately, I hope to maintain on LDN alone for the course of the PMR, however long that is. I also hope that LDN will work on my allergic contact dermatitis, which has been in remission since I started prednisone.

REPLY
Please sign in or register to post a reply.