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?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@sikocesca

I DO NOT TAKE ANY KIND OF PAIN MEDS. My neurologist said she would prescribe the LDN for me and would send it to Belmar pharm to compound it in Colo.
What dose did you start with???

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I am not sure what my dosage was as it has been several years since I took it. It seems like it was 50 mg. I don’t know the other things it was compounded with. I don’t normally take opioids either, but I had knee replacement last year and several bad falls where I messed up my face and mouth. I did take them for awhile with all of those. Hope not to have anymore bad falls.

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LDN
Anyone have info on this for treatment of PMR?

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@novkgen

LDN
Anyone have info on this for treatment of PMR?

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Hello @novkgen, Welcome to Connect. You will notice that we moved your post to an existing discussion on the same topic here:
-- Anyone with experience using Low Dose Naltrexone?
https://connect.mayoclinic.org/discussion/anyone-with-experience-using-low-dose-naltrexone/
Are you considering LDN instead of prednisone for your PMR?

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@johnbishop

Hello @novkgen, Welcome to Connect. You will notice that we moved your post to an existing discussion on the same topic here:
-- Anyone with experience using Low Dose Naltrexone?
https://connect.mayoclinic.org/discussion/anyone-with-experience-using-low-dose-naltrexone/
Are you considering LDN instead of prednisone for your PMR?

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I would be interested in trying it.

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Glad to repeat my experience about LDN. I consider it a miricle drug for me but others have had no effect. But the only side effects can be vivid dreams so worth a try. I had two types of pain when I was waiting to be diagnosed for PMR. Pain when I used my muscles and pain when I wasn't moving. (Trying to sleep.) The LDN (2 mg) stopped the not moving pain in two days. Much like pred can do when it works. (Without the side effects.) When I went off of it for awhile, when I had my hip replaced (I was on opiates) after 3 weeks, the all over pain came back. I got back to the LDN as soon as I could. It also helped my small intestine heal from the small ulcers that were plagueing me. (I have Crohn's.) So, great drug but probably not a replacement for pred with PMR. I use them both. Lots of on-line research. Look at it.

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Yes I have been on LDN for about 30 days now. It has helped a good deal not only with PMR stiffness my anxiety and mental focus seem to be better as well.
I was feeling good enough to stop steroids, but after a few weeks I expectancies swelling in knee an old injury that not flare along with PMR so I’m back in 5mg steroids and will tapper after 30 days.
I was advised that LDN can continue to help improve symptoms more with time.
Good luck to you!

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I just started taking it today for itchy petechiae that developed nine months ago and has not improved,

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Let us know what you experience.

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@suetex

Let us know what you experience.

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It’s been four days, and I think Naltrexone is a wonder drug! My rash is still there, but the itching has almost completely stopped!

There are side effects to this drug. I have insomnia, and a bit of a stomachache. It also is supposed to kill your appetite. Mine was already dead, so I can’t tell the difference,

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Your side effects are interesting as I experienced none of that. Just vivid dreams that were like Broadway musicals. Lots of color. Miss them since they stopped. But I was underslept because of pain which it stopped. I think it is a wonder drug, too.

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