Anyone have experience with Low Dose Naltrexone instead of prednisone?

I was diagnosed with PMR six months ago and have been on prednisone. The stiffness and pain in my legs came back and I thought my doctor would put me in MTX as he and I had previously discussed this. In the end he said no and would not prescribe anything else ( except decreasing doses of prednisone) so I went to a holistic clinic in Burnsville, MN. There I was connected with a fabulous Nurse Practitioner who asked me if I would like to read up on LDN and decide if that would be something I would consider. About a month later, after researching LDN I decided to drive it a try. It is at the post office ( shipped to me but a compounding pharmacy) and will start on Saturday 0.05 mg once a day. I will give an update after a few weeks and let everyone know what happens. The goal for me is to reduce pain, improve my issues of inflammation and to get off prednisone as soon as possible. This LDN has little known side effects according to the compounding pharmacist.

Any thoughts on replacing prednisone with low dose naltrexone?

I am interested in this too.Hope we get some thoughts.

I will be speaking with my PCP about this next week. I'm wondering if it would work to introduce LDN and then proceed with a standard (not slow PMR) prednisone taper until just the LDN is working. If you are not familiar with LDN, here's a reference: https://www.lowdosenaltrexone.org/.

Hello @sued70, Welcome to Connect. I see that you have already connected with @becky72 and @pkalkstein. You will notice that we moved your post to an existing discussion on the same topic so that you can connect other members who have shared their experience with low dose naltrexone here:
--- Anyone with experience using Low Dose Naltrexone?: https://connect.mayoclinic.org/discussion/anyone-with-experience-using-low-dose-naltrexone/.

Have you discussed replacing prednisone with low dose naltrexone with your doctor or rheumatologist?

Finaly, I feel like this group is taking a serious look at LDN. I've been on it at 2 mgs since mid 2019. It stopped my nonmoving pain in two nights. However, the pain when I was using my muscles continued. So I would say it isn't a panacea. However, those of us with multiple autoimmune disorders (I have Crohn's) have nothing to lose from trying it. (It healed my small intestine.) It doesn't have side effects like pred. It is very benign. The dose that most LDN users take is 4.5 mg a night. I settled at 2mg because I couldn't tell a difference between 2mg vrs. 4mg. Now I wonder if 4mg might be better. I might have even more relief from my leg pain. My search for a U.S. Dr. who knows how it works continues. It is more common in the UK.

Is the LDN helping with your pain? How much?

Thank so much @suetex for this useful info, I will ask my gp for this, hopefully he will agree, with few side effects if any I can’t see why he would not. I refused prednisone because of the bone thinning etc., my pain has been horrific but is gradually subsiding after 4 months of hell. Thanks again.

Some docs do describe it as used for pain but it really does so much more. Some gps mistakenly think they need a opiate certificate to persribe it. Since it is sort of a "anti opiate" they don't. I hope you can get it. Maybe educate yourself first if you need to.

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?