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

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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Alas, my good fortune did not last. On the third day of 7.5mg prednisone, I had a flare. I went back to 12.5 mg to calm things down, and am now back at 10mg. From what I understand of the results of others, LDN begins to be efficacious when prednisone

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@pkalkstein

Alas, my good fortune did not last. On the third day of 7.5mg prednisone, I had a flare. I went back to 12.5 mg to calm things down, and am now back at 10mg. From what I understand of the results of others, LDN begins to be efficacious when prednisone

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Please consider using MSM daily to help prevent relapses. Also helps with some pain. No side effects, look it up..

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Thanks @suetex! I used MSM in the past and I still have some. Didn't know it was good for this purpose, but will try it, although the horse is already out of the barn.

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Horses, dogs and people-we all share some stuff. Trick is knowing which one. If yours has a scoop in it, I use the smaller side. (3 grams) one every day in the morning. Down regulates IL6 which studies is implicated in flairs. One morning I forgot and by mid day I hurt in places I usual don't. I hurried to take it and in about an hour, the pain went away. I'm a believer.

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@pkalkstein

Thanks @suetex! I used MSM in the past and I still have some. Didn't know it was good for this purpose, but will try it, although the horse is already out of the barn.

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@suetex might be on to someting. WebMD doesn't have too many negatives about MSM
https://www.webmd.com/vitamins-and-supplements/msm-methylsulfonylmethane-uses-and-risks#:~:text=Don't%20take%20any%20chances,you%20are%20pregnant%20or%20breastfeeding.
Maybe I will try some too. However, my biologic is downregulating IL-6 already.

I'm sorry you are having a flare. It is incredible how many people have flares when they get down to approximately 7 mg of prednisone. It is interesting that approximately 7 mg of prednisone corresponds to the amount of cortisol the body needs daily to regulate inflammation and other bodily functions. When you start to go much lower than 7 mg the body seems to go crazy and can't maintain its homeostasis.
https://www.ncbi.nlm.nih.gov/books/NBK538239/

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@pkalkstein

Alas, my good fortune did not last. On the third day of 7.5mg prednisone, I had a flare. I went back to 12.5 mg to calm things down, and am now back at 10mg. From what I understand of the results of others, LDN begins to be efficacious when prednisone

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As reported, LDN did not replace the diminished prednisone, and thus a flare occurred. However, I have raised my LDN dose to 7mg, taken just before bed. This has had several good results. The peripheral neuropathy is gone (but I also upped the B-12, so maybe that was it), and I have now had two nights with no allergy. Since titrating up to 7 I have slept like a log and have not been troubled by weird dreams. I think I have yet to find the LDN "sweet spot" and still have hopes for action against PMR, although that hasn't happened yet.

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Hello everyone, I'm new on this forum and have yet to try LDN. I'm hoping my GP will prescribe it to enable me to taper more quickly off Prednisone. Currently down to 5.5mg of Pred by using the Ultra Slow Method. I was diagnosed in Dec 2019 with PMR, with starting dose of 15mg and in Mar 2020 sadly GCA appeared too, I then had to increase my Pred to 40mg where I've been tapering ever since with a lot of yoyoing. GCA concerns me far more than PMR, due to the loss of sight that can potentially happen very quickly.

If I am issued a prescription for Naltrexone will the risk still be as high from getting GCA again?

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I don't think we can tell. Since we don't know what causes PMR and GCA, it doesn't seem likely that anyone could predict the effect of LDN. However, in general LDN has a beneficial effect, and since it both fights inflammation and increases endorphins, perhaps it would be a barrier against recurring GCA. It doesn't seem at all likely that LDN would make your situation worse, but I'm not a medical professional.m As for myself, I have found LDN pretty great but I am still at a high enough dosage of prednisone (12.5) that I do not expect it to replace the prednisone. Yet.

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I went to bed last night with some pain and stiffness in the shoulders. I took my 7 mg dose of LDN at bedtime. When I woke up at about 2 AM, the pain was gone. This hasn't happened before, so I'm thinking maybe I am near the right dose and LDN is working against PMR. Let's see how it plays out.

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@pkalkstein

I went to bed last night with some pain and stiffness in the shoulders. I took my 7 mg dose of LDN at bedtime. When I woke up at about 2 AM, the pain was gone. This hasn't happened before, so I'm thinking maybe I am near the right dose and LDN is working against PMR. Let's see how it plays out.

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That sounds promising! Has LDN enabled you to decrease your prednisone dose any?

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