Anyone have experience with Low Dose Naltrexone instead of prednisone?

Posted by vfaye @vfaye, Nov 19, 2019

I have been diagnosed with PMR and can’t take Prednisone.
LDN has been suggested - it has been used off label for autoimmune disorders. Has anyone heard of this?

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@sususi

Thanks again, I watched Dr Cohen talking about it on utube, he says it helps mood as well as sleep and pain reduction. After reading your experience with it I would like to try it and feel sure it could help, I have not taken anything to stop the pain except boron which does help slightly, I’ve lost 20lb with battling pain, I’m quite thin now. Does LDN help the harsh morning pain?

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I don't think I can predict how it will help you, but I think it will help in ways that will surprise you. Give it some time when you do try because some ways it helps is measured in days and others take a couple of months. Your body has to heal itself but LDN seems to help balance your immune system.

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@redboat

Is the LDN helping with your pain? How much?

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I am interested too in LDN. Please let us know how you do on LDN. How much do you take a day? Any side effect"

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I am newly diagnosed with PMR, September 2024. My father had it for several years until he died and was never able to wean off prednisone. I don't tolerate it well and am trying my hardest to manage the disease without resorting to it. I've been working with a naturopathic doctor and am taking LDN along with supplements meant to heal and strengthen gut barrier, and reduce inflammation. I am getting better slowly. Time will tell if this will work! Anyone else managing this disease without taking prednisone?

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@robinrae

I am newly diagnosed with PMR, September 2024. My father had it for several years until he died and was never able to wean off prednisone. I don't tolerate it well and am trying my hardest to manage the disease without resorting to it. I've been working with a naturopathic doctor and am taking LDN along with supplements meant to heal and strengthen gut barrier, and reduce inflammation. I am getting better slowly. Time will tell if this will work! Anyone else managing this disease without taking prednisone?

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Hi, Robin. I had an onset of PMR last December and like you was very concerned about the long term effects of prednisone. I managed the PMR with twice daily Aleve until very recently. I had a small spike in my CRP and symptoms. My rheumatologist was concerned about having to continue the Aleve indeterminately so I agreed to a low-dose, relatively short term course of prednisone. I started on 5 mg daily about three weeks ago and I’m tapering every two weeks planning to be off by December. If the pain persists past that, I’m planning on managing with Aleve again. So many here on the forum have had such struggles with prednisone that I remain wary and will try to avoid getting into that situation. I’ve also started some PT for my shoulders as I was starting to lose range of motion due to pain and guarding.

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Absolutely being used for PMR and other AI diseases. People are finding tremendous help. Some are allergic to the avicel capsule and filler but many compounding pharmacies can use sucrose, rice or other ingredients.
My daughter has taken it for a few years now...she lives in upstate NY and a doc from Sinai hospital, finally, after so much pain and misery, suggested LDN. It has been a game changer for her.
You can basically create your own treatment plan once you find a baseline that works for you. You can take this stuff for life. Not saying it will be the answer for everyone, but the findings are very positive
Here is a FB site I trust:
https://www.facebook.com/groups/108424385861883
Best of luck.

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@leetaanderson

Hi, Robin. I had an onset of PMR last December and like you was very concerned about the long term effects of prednisone. I managed the PMR with twice daily Aleve until very recently. I had a small spike in my CRP and symptoms. My rheumatologist was concerned about having to continue the Aleve indeterminately so I agreed to a low-dose, relatively short term course of prednisone. I started on 5 mg daily about three weeks ago and I’m tapering every two weeks planning to be off by December. If the pain persists past that, I’m planning on managing with Aleve again. So many here on the forum have had such struggles with prednisone that I remain wary and will try to avoid getting into that situation. I’ve also started some PT for my shoulders as I was starting to lose range of motion due to pain and guarding.

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Leeta, I am impressed that you could manage so long on the advil alone. I believe that my original huge flare was caused by taking NSAIDS for an extended period for a neck injury. They made my stomach so upset...and anytime I get an autoimmune flare of any type, the first step to recovery is to heal the gut!
I see a rheumatologist in January...soonest I could get in. I've been wondering if it is possible to try a very low dose as you are doing! Thank you for replying and best wishes for your recovery.

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@glinda47

Absolutely being used for PMR and other AI diseases. People are finding tremendous help. Some are allergic to the avicel capsule and filler but many compounding pharmacies can use sucrose, rice or other ingredients.
My daughter has taken it for a few years now...she lives in upstate NY and a doc from Sinai hospital, finally, after so much pain and misery, suggested LDN. It has been a game changer for her.
You can basically create your own treatment plan once you find a baseline that works for you. You can take this stuff for life. Not saying it will be the answer for everyone, but the findings are very positive
Here is a FB site I trust:
https://www.facebook.com/groups/108424385861883
Best of luck.

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Thank you for the link! Just joined the group.

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@robinrae

Leeta, I am impressed that you could manage so long on the advil alone. I believe that my original huge flare was caused by taking NSAIDS for an extended period for a neck injury. They made my stomach so upset...and anytime I get an autoimmune flare of any type, the first step to recovery is to heal the gut!
I see a rheumatologist in January...soonest I could get in. I've been wondering if it is possible to try a very low dose as you are doing! Thank you for replying and best wishes for your recovery.

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Good luck, Robin! I had some luck getting a quicker appointment by putting myself on the cancellation call list.

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@robinrae

Thank you for the link! Just joined the group.

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Great. Hope it's helpful!

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@robinrae

I am newly diagnosed with PMR, September 2024. My father had it for several years until he died and was never able to wean off prednisone. I don't tolerate it well and am trying my hardest to manage the disease without resorting to it. I've been working with a naturopathic doctor and am taking LDN along with supplements meant to heal and strengthen gut barrier, and reduce inflammation. I am getting better slowly. Time will tell if this will work! Anyone else managing this disease without taking prednisone?

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I am on prednisone and can’t get under 2 mg. I have now decided to see a naturopath as well. It has been just about two weeks of taking many supplements for gut and inflammation. I had some back pain and she indicated it would be mostly gone in two weeks and it is! I am so hoping this will help me get off of the prednisone. She says 3 months, so for my bodies sake I’m going to give it a try! Good luck to all on this journey. BTW diagnosed with PMR 6-22! Pred was 60,40,20,15,12,10,9,8,7,6,5,4,3 now 2 mg! 2.5 years on prednisone.

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