1. < Polymyalgia Rheumatica (PMR)

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.

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janielou56 | @janielou56 | Apr 1, 2023
In reply to @saltyg "My ears have been ringing I think since I started prednisone. My rheumatologist was like go..." + (show)
@saltyg

My ears have been ringing I think since I started prednisone. My rheumatologist was like go to an ENT. Do you know why yours are ringing?

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Probably from the prednisone, not entirely sure.

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don57 | @don57 | Apr 2, 2023

I've been on Prednisone since December ( down at 15 mg ) and I have been experiencing ringing in my ears, over the last several weeks. It gets worse in the evening. It could be tinnitus, or there could be a correlation with the Predisone. I'll be confirming with my doctors next week.

I also developed a sore throat and a yeast infection on my tongue for several weeks. As it turns-out these are side effects also with the Predisone. Treated with Nystatin mouth wash and it cleared up. With Predisone treatment, there's always something... immediately check with your doctor.

I wish that the doctors would be more thorough to go over the side effects of Predisone treatment, so that we know what to look for! And I do read the Product Information sheets.
This site is a big help in hearing what others are experiencing.

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pkalkstein | @pkalkstein | Apr 4, 2023

Gulp--here we go. My PCP is prescribing 7.5mg from now on. I have been at 10 for three weeks. I suspect this jump is too far too fast. On the other hand, if it works, I'll know that the LDN (I'm at 4.5mg) really does work for PMR. I'm excited but skeptical. More next week.

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1 reply
janielou56 | @janielou56 | Apr 5, 2023
In reply to @pkalkstein "Gulp--here we go. My PCP is prescribing 7.5mg from now on. I have been at 10..." + (show)
@pkalkstein

Gulp--here we go. My PCP is prescribing 7.5mg from now on. I have been at 10 for three weeks. I suspect this jump is too far too fast. On the other hand, if it works, I'll know that the LDN (I'm at 4.5mg) really does work for PMR. I'm excited but skeptical. More next week.

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Wow I hope it was. The Naltrexone has so few side effects compared with prednisone. Frankly it sounds like a wonder drug that can be used for a number of different things.
🤔 Now I am wondering since I just started day 3 week 1 of tapering down for the first time if my Dr should raise my LDN?

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1 reply
pkalkstein | @pkalkstein | Apr 5, 2023
In reply to @janielou56 "Wow I hope it was. The Naltrexone has so few side effects compared with prednisone. Frankly..." + (show)
@janielou56

Wow I hope it was. The Naltrexone has so few side effects compared with prednisone. Frankly it sounds like a wonder drug that can be used for a number of different things.
🤔 Now I am wondering since I just started day 3 week 1 of tapering down for the first time if my Dr should raise my LDN?

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Since my doctor did not know about LDN he was not able to guide me. I started with 1/4 tablet for a week, then 1/2 for another week, but noticed no difference. Now at 4.5, taken at night, I feel fine in the morning. I don't know if this is my "sweet spot," but maybe time will tell.

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pkalkstein | @pkalkstein | Apr 11, 2023

An update on LDN. I am now at 7.5mg prednisone and still 4.5mg LDN. I have no pain or stiffness in the AM. I was diagnosed in December and started 20mg prednisone then. On a Facebook group for LDN I asked if anyone else had replaced prednisone with LDN and got this encouraging response:
"I did that about 5 years ago. It worked. In less than a month I was off prednisone and pain free on 4.5mg.if I remember correctly I was on about 8mg prednisone when I started. I had been on prednisone for a year."
More later.

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2 replies
pkalkstein | @pkalkstein | Apr 13, 2023
In reply to @pkalkstein "An update on LDN. I am now at 7.5mg prednisone and still 4.5mg LDN. I have..." + (show)
@pkalkstein

An update on LDN. I am now at 7.5mg prednisone and still 4.5mg LDN. I have no pain or stiffness in the AM. I was diagnosed in December and started 20mg prednisone then. On a Facebook group for LDN I asked if anyone else had replaced prednisone with LDN and got this encouraging response:
"I did that about 5 years ago. It worked. In less than a month I was off prednisone and pain free on 4.5mg.if I remember correctly I was on about 8mg prednisone when I started. I had been on prednisone for a year."
More later.

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I belong to a Facebook group about LDN. Mentions of PMR are plentiful in that group, although PMR is not among the leading diseases addressed there. I have compiled a spectrum of stories about LDN use for PMR, which you can see on my Google drive: https://tinyurl.com/2q8ebstu.

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suebee99 | @suebee99 | Apr 14, 2023
In reply to @pkalkstein "A while back I posted that I would be trying low-dose naltrexone and would report the..." + (show)
@pkalkstein

A while back I posted that I would be trying low-dose naltrexone and would report the results. Here is an update after one month of LDN. I began taking 1.1mg of LDN in addition to my regular dose of prednisone. I had just tapered slowly to 12 1/2mg, taking 5mg at 2 AM. After a week I noticed no effect of the LDN and began taking 2.2mg of it. After another week, still no perceived effect, so went to 4.5mg, which was one tablet of LDN. After trying various time and dose combinations, I decided to try to taper the prednisone to 10mg. I took the prednisone, one 10mg tablet, at noon, and 4.5mg LDN at 11:30PM. For the first two days I woke with a feeling of mild euphoria, but still could feel the PMR in my left bicep and shoulder. On the next day there was no pain or stiffness, and for the last two days I have felt like there was no PMR at all. I plan to keep to this regimen for a week and then try to continue the prednisone taper, slowly. It is early days and who knows if this success will hold. My hope is that the LDN will help me taper more easily than I could without it. My second hope is that I can eventually stay on a maintenance dose of LDN instead of prednisone. Whereas prednisone does the job on PMR, it suppresses the immune system and comes with negative side effects. LDN, on the other hand, works by bolstering the immune system and should have some power to bypass or mitigate disease. I have done a great deal of reading about LDN and recommend the several books and many pages of web material. So far, LDN looks promising, but we have a mystery disease and the future is unclear.

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My husband has been on prednisone for 2 1/2 yrs, each time he tapers down to 1 mg then the pain returns. We asked about trying LDN but his rheumatologist was not in favor. Can you provide the name of the books you mentioned in your post, and possibly some good links to bolster the argument for trying this? TIA

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1 reply
suetex | @suetex | Apr 14, 2023

Sadly, the US docs don't know much about LDN. It is used a lot in Great Britain, and the group there that puts out a lot about it is The LDN Research Trust. Thet have a volumn II of their research that is a good read. Amazon carries it (published in 2020). They also have a site on the web. Check it out and see if you can find something relatively short. Most Docs I know don't have a lot of time.

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pkalkstein | @pkalkstein | Apr 14, 2023
In reply to @suebee99 "My husband has been on prednisone for 2 1/2 yrs, each time he tapers down to..." + (show)
@suebee99

My husband has been on prednisone for 2 1/2 yrs, each time he tapers down to 1 mg then the pain returns. We asked about trying LDN but his rheumatologist was not in favor. Can you provide the name of the books you mentioned in your post, and possibly some good links to bolster the argument for trying this? TIA

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This is what persuaded my doctor. It's from 2014 but still very useful. It can be downloaded as a pdf. The gist is that LDN is not harmful and can be useful.
https://link.springer.com/article/10.1007/s10067-014-2517-2

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