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.

suetex | @suetex | Dec 10, 2022

There is an excellent website about how LDN works put out by the LDN Research Trust titled : How LDN works.

It covers alot. Anyone contemplating its use should look at it.

vandyms1974 | @vandyms1974 | Dec 10, 2022

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

Yes, I was hopeful we might consider low dose Naltrexone for PMR and I need to get off prednisone at some point. My rheumatologist indicated it is not covered by most insurances.

vandyms1974 | @vandyms1974 | Dec 10, 2022

I also would like to try it as opposed to other drugs. I am on 3mgs pred now and trying to get over Covid. Rheumatologist recommended hydroxychloroquine. Anyone had experience with that for PMR?

julie11 | @julie11 | Dec 11, 2022

I took LDN for about a year for my Small Fiber Neuropathy. Any improvement it gave me was marginal. I'm currently managing pain with Cymbalta, and get help getting to sleep with medical cannibis. And I still need to take a small dose of oxycodone a few times a month.

sharonanng | @sharonanng | Dec 11, 2022

In reply to @vandyms1974 "Yes, I was hopeful we might consider low dose Naltrexone for PMR and I need to..." + (show)

Does anyone have experience with hydroxychloroquine? My rheumatologist has had me on it for two months due to the arthritis in my hands which seemed to have been aggravated by PMR. It has helped to decrease the swelling and soreness in my hands.

cookiegirl1944 | @cookiegirl1944 | Dec 11, 2022

In reply to @babsstruck "I was told I could not be on opioids and take LDN." + (show)

I am starting LDN this week for PMR. The pharmacist definitely said no opioids when taking LDN.

suetex | @suetex | Dec 12, 2022

No experience with hydoxychloroquine. Read about it and decided it was too risky. Seems like I am on too many meds already.

sharonanng | @sharonanng | Dec 13, 2022

In reply to @suetex "No experience with hydoxychloroquine. Read about it and decided it was too risky. Seems like I..." + (show)

I felt exactly the same way at first, but it has definitely helped the arthritis in my hands. So far I am tolerating it well. All the best to you.

suetex | @suetex | Dec 13, 2022

I am so glad that it worked out for you. My rheumy is very focused on pred and hasn't offered me anything else. I have lots of complaints sbout my legs and he doesn't seem to want to address them. Guess I need to make a bigger stink. I will keep your good experience in mind if it comes up.

suetex | @suetex | Dec 14, 2022

In reply to @vandyms1974 "Yes, I was hopeful we might consider low dose Naltrexone for PMR and I need to..." + (show)

Sadly, it is not covered but I would like to find the way to pressure the insurance companies to cover it. It has so many "off label" uses now and the safety at higher doses has already been done. If anyone has any knowledge of the process, please let me know.