Hi kathyjb, I have PMR and I’m not on prednisone, same as you I don’t want the side effects, my opinion they are serious. I want to try LDN but my GP can’t prescribe it on nhs, probably a private doctor would, meanwhile he has given me nefopam, not started it yet but will give it a try, it does not read as safe as LDN - Low Dose Naltrexone, this is not the same as Naltrexone higher dose.

There are anecdotal positive reports on using Low Dose Naltrexone (LDN) to mitigate PMR pain.

LDN appears have minimal side effects. (I'm not a doctor, so do your research to make sure.)

Here's a link to a 2014 journal paper describing LDN and possible mechanisms behind its pain relief.
https://link.springer.com/article/10.1007/s10067-014-2517-2
There is currently a thread on this Mayo website for PMR where someone has reported positive initial results in relieving PMR pain with LDN.
https://connect.mayoclinic.org/discussion/ldn-and-prednisone/
The following link has more general information, including a link to a video
https://www.lowdosenaltrexone.org/features.html
There are several books on LDN, including "The LDN Book, Vol I" and "The LDN Book, Vol II".

LDN does seem to lower inflamation and IL6 in particular which seems to be the main transgressor in PMR. I know there are some other cytokines but I think the research is on going on that. MSM is supposed to down regulate IL6 also and from my experience it seems to. One drug I could do without (am seem stuck with) is the estrogen blocker, anastrozole. Some of its side effects are a lot like PMR and can be very confusing.

Hello @kathyjb, I would like to add my welcome to Connect along with @sususi, @redboat, @claude67 and others. You will notice that we moved your post to an existing discussion on the same topic so that you can read what other members have shared here:
--- Alternative to Prednisone for Treating PMR?: https://connect.mayoclinic.org/discussion/alternative-to-prednisone/.

I've had two occurrences of PMR, the first lasting 3 and half years, the second lasting 1 and half years, both with a starting dose of 20 mg prednisone. The second time was shorter due to what I believe was changing my lifestyle which included losing some weight, eating healthier - less processed foods, sugar and inflammatory foods and exercising more.

Have you looked into any lifestyle changes which might also help?

Hi....I was presented with PMR in under 24 hours with horrendous pain from my neck down. From completely healthy, logging the day before to full blown PMR the next. Couldn't even dress myself or get out of bed without help. Like you I did not want steroids....until the pain was enough to make me consider them. After my first dose of 20mg of prednisone I felt like superman. The next day not so much and the next day the doctor upped my prednisone.
It is totally a learning curve that you teach yourself. I try to keep myself on the edge or the least prednisone possible. Problem is it is easy to flare from this edge and I probably end up taking more prednisone to beat the flare than if I had used a tad more every day. To each his own. I am rethinking my mindset on this. PMR drugs all have some serious POSSIBLE side affects.
Prednisone seems to be the first choice of drug for PMR. There must be a reason.
Remember, PMR is a little researched disease and you and I and many others like us have it. Not many people like their disease treatment whatever the disease. Your lifestyle will change, your activities will change, your body shape may change. You look perfectly normal on the outside but you are being tortured on the inside. Family have told me I was always so active, now, some days, I sleep all day. In the end it will be the lack of pain that will tell you how to live as normal a life as you can. The light at the end of the tunnel is many people go into remission from PMR.