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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@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.

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I'm sorry to hear about your husband and the situation you had to deal with.

I'm interested in hearing more about your experience with LDN and prednisone.

Are you still taking the LDN with 20 mg of prednisone? Does the LDN make a difference in your pain even with the 20 mg of prednisone? Do you plan to taper down on prednisone and keep taking the LDN? Thanks.

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I plan to stay on the LDN regarless of what the PMR does as it helps my Crohn's and my basic health. I am currently taking 4 mg of methylprenisalone and can't really tell what my PMR is doing as my estrogen blocker is causing some side effects as well as a balance problem that no doc can explain. So, don't use me as an example because I am too wierd. Do I have pain? Yes, but it is very different now than when I started that it is hard to tell what it is from.

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Thank you, need all the "Hugs" I can get.

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I think this is new territory that holds promish for some. Listen to your body and take your time. Give the LDN a chance to work before you start reducing the pred because I think some its anti-inflamatory actions are not that obvious. I am on 2 mg because I didn't see any difference between 2 vrs 4 mg and now I wish I had given 4 mg a longer trial. I will be interested in how your dreams change because mine were a real hoot. Unfortunately, that side effect wears off over time.

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@suetex

I think this is new territory that holds promish for some. Listen to your body and take your time. Give the LDN a chance to work before you start reducing the pred because I think some its anti-inflamatory actions are not that obvious. I am on 2 mg because I didn't see any difference between 2 vrs 4 mg and now I wish I had given 4 mg a longer trial. I will be interested in how your dreams change because mine were a real hoot. Unfortunately, that side effect wears off over time.

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To go back and answer your question in more detail- the LDN made a difference in my pain WITHOUT pred since I hadn't been diagnosed yet. It stopped my non-moving pain (trying to sleep) in two days. This was a real plus. I was still left with the moving my muscles under load pain and that is what the pred addressed. Am I average or unique, I have no idea.

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Just an update on my introduction of LDN: after trying several different arrangements of dosage and times of day, I am now on this regimen, which I will try for a week--
2 AM - 5mg prednisone
8 AM - 7.5mg or 5mg (alternating this week) prednisone
1 PM - 4.5mg LDN
Initial results are good (no pain in the morning), but I feel like a man in the dark looking for a flashlight. There are good LDN sources on the web and on Facebook, but nothing definitive on how to replace prednisone with LDN, which is my goal.

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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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@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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So glad to hear this. 👏Today is my 52nd day with PMR and 20 MG prednisone. 3 weeks ago I started taking LDN @ 2.25 Taking both at the same time just after bf on a full stomach. Now about to finish 1 week of LDN@ 4.5 This dose has helped the ringing in my ears and the headaches and the loopy feeling all become less. Still on 20 gm prednisone. This disease is such a mystery! Pain levels upon waking are all much better approx 0-2 It was my excellent naturalpathic Dr. Who put me on Naltrexone. I still have quite a few side effects from the prednisone. I am going today to ask my Dr if we could pls start tapering down soon. I feel like it's kind of by guess and by golly. Back in the beginning of February My inflammation levels were: Sed rate 77 CRP 4.55 I'm not sure if I have GCA but since I started on the Low dose Naltrexone I have less headaches. In 3 weeks We will be going to Antelope Canyon and I would so like to be able to climb up and down the ladder steps.🙏🏻

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@janielou56

So glad to hear this. 👏Today is my 52nd day with PMR and 20 MG prednisone. 3 weeks ago I started taking LDN @ 2.25 Taking both at the same time just after bf on a full stomach. Now about to finish 1 week of LDN@ 4.5 This dose has helped the ringing in my ears and the headaches and the loopy feeling all become less. Still on 20 gm prednisone. This disease is such a mystery! Pain levels upon waking are all much better approx 0-2 It was my excellent naturalpathic Dr. Who put me on Naltrexone. I still have quite a few side effects from the prednisone. I am going today to ask my Dr if we could pls start tapering down soon. I feel like it's kind of by guess and by golly. Back in the beginning of February My inflammation levels were: Sed rate 77 CRP 4.55 I'm not sure if I have GCA but since I started on the Low dose Naltrexone I have less headaches. In 3 weeks We will be going to Antelope Canyon and I would so like to be able to climb up and down the ladder steps.🙏🏻

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Will start tapering down next week. Starting from 20mg to 17.5 mg 1week
17.5 to 15mg 1week
15mg -12.5mg 1 week
12.5mg-10mg 1week
*if at any point pain is to much, resume prior dose.
I find if I am more faithful on autoimmune diet I have less arm pain.
I need to look into ordering the Terry Whal diet/protocol.
I'm really hoping my ringing in the ears will stop too. I'll keep you posted.

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@janielou56

Will start tapering down next week. Starting from 20mg to 17.5 mg 1week
17.5 to 15mg 1week
15mg -12.5mg 1 week
12.5mg-10mg 1week
*if at any point pain is to much, resume prior dose.
I find if I am more faithful on autoimmune diet I have less arm pain.
I need to look into ordering the Terry Whal diet/protocol.
I'm really hoping my ringing in the ears will stop too. I'll keep you posted.

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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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