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.

@susanh824

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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Is it for PMR?

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In reply to @vandyms1974 "Is it for PMR?" + (show)
@vandyms1974

Is it for PMR?

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What is PMR? I am taking it for hives related to an autoimmune condition?

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I was put on it as I have Rheumatoid Arthritis and Fibromyalgia but I also take opiates for my pain, my experience was not good 😌 my suggestion is to make sure you are at least ten days off opiates before starting or your going to have some very weird side affects, I can not go ten days with out pain meds my pain levels are not good, I would love to try again though as I’ve heard wonderful things about LDN !! Keep us posted how it works for you please 🙏

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@babsstruck

My rheumatologist prescribed it for me. I had bad bursitis I my leg and hip. I took it for a long time until I realized I wasn’t in pain any longer. My prescription was for a compound script and had to go to a special Walgreens to get it. It did help You have to make sure you don’t take any opioids.

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I continued to take my 5 mg oxycodone 5-6 times a day when I started, and I’ve never felt anything like it, I felt like a true addict having severe withdrawal symptoms, my muscles were moving all over the place, I couldn’t sleep I was yawning so much it was painful, I got scared and stopped the LDN, my doc and pharmacist told me I could take them together….. never again, I want to restart but I’m scared to stop my opiates cause my pain is so bad even the pills I take only cut a wee bit of it it gives me some life, my life has slowed almost to a stop since getting sick 8 years ago !!

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@queenovharts

I continued to take my 5 mg oxycodone 5-6 times a day when I started, and I’ve never felt anything like it, I felt like a true addict having severe withdrawal symptoms, my muscles were moving all over the place, I couldn’t sleep I was yawning so much it was painful, I got scared and stopped the LDN, my doc and pharmacist told me I could take them together….. never again, I want to restart but I’m scared to stop my opiates cause my pain is so bad even the pills I take only cut a wee bit of it it gives me some life, my life has slowed almost to a stop since getting sick 8 years ago !!

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I was told I could not be on opioids and take LDN.

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@babsstruck

I was told I could not be on opioids and take LDN.

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Ya that’s what I’m reading everywhere my challenge is stopping for ten days of hell when it comes to my pain, but in the new year I’ll try again ❤️

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@queenovharts

Ya that’s what I’m reading everywhere my challenge is stopping for ten days of hell when it comes to my pain, but in the new year I’ll try again ❤️

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I don’t know what type of pain you have or if you are seeing a pain doctor but I did. I do see a neurologist for migraines and Dysautonomia. My neurologist prescribed muscle relaxers at night for migraines and gabapentin. I also am prescribed Cymbalta for Dysautonomia and a side effect of that drug is pain relief all over body. I would suggest you go to whatever doctor is treating you and try to slowly stop opioids and find something else for pain. It depends on what and where your pain is. I also had an ablation on my neck for pain there from Dysautonomia. Good luck.

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@babsstruck

I don’t know what type of pain you have or if you are seeing a pain doctor but I did. I do see a neurologist for migraines and Dysautonomia. My neurologist prescribed muscle relaxers at night for migraines and gabapentin. I also am prescribed Cymbalta for Dysautonomia and a side effect of that drug is pain relief all over body. I would suggest you go to whatever doctor is treating you and try to slowly stop opioids and find something else for pain. It depends on what and where your pain is. I also had an ablation on my neck for pain there from Dysautonomia. Good luck.

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Thank you I will speak to my specialist about these medication, my pain is nerve pain everywhere, it hurts to be touched if that makes sense! I have a heightened pain sense than others, everything hurts, I feel like I vibrate with pain and get lots of shooting pains all over that feel like hot big needles going into my skin and nerves, then my RA give me inflammation and joint pain, large welts all over my body most days that can swell up so large I can not move that area of my body, it’s all very weird to be honest, my pain never goes away wakes me all night long and fatigue and brain fog riddle me useless most days

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I hope you are seeing a neurologist. He should be able to find something for nerve pain. I also take some supplements to calm my nerves and the neurologist should be able to suggest some. My neurologist even sells some from his office.. Hope you get some help.

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This is for everyone trying LDN and opiates. No, you can't take them together. I think 10 days between opiates and LDN is a bit much but I think it depends on your dose. There is a formula that uses both but it is for a special use and has to be just the right balance of meds. There is a lot about it on the web but they haven't found out everything that it does yet. I would suspect that it is good for any autoimmune situation as it has been known to "reboot" the immune system. To date, it is used for Crohn's, MS, fibromyalgia and pain in general. Myself, my experiance has been good but everyone is different. It does require a script and most rheumies know about it. Doctors can persribe it without an opiate certificate. It isn't one and it does not create dependence. I take 2mg. I was perscribed 4mg but 2mg did as well so why take more than I need?! Personally, I hope to use it always.

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