I’m sorry this is happening. It’s so frustrating to have what sounds like a flare after making such steady progress. My take is it’s not anything you did wrong…it’s the nature of PMR (and many other chronic pain conditions). It sounds like you may have had a much smoother taper than my dad has had. It’s been a very bumpy road.

And for what it’s worth, from what I’ve observed, it seems that once someone gets below 10 mg prednisone, things can get pretty dicey. My dad is the one who had PMR, and he’s Definitely had to bump up his prednisone dose MULTIPLE times. I’m not sure if that’s what you mean about “tapering more than once”?

My dad’s rheumatologist explained that once the prednisone dose gets so low, you have to start reducing by fewer milligrams because if you reduced by the same increments, you’d be reducing by a larger and larger proportion of the total dose.

The same thing that seems to be happening to you also happened to my dad. When he got to 10 mg and then moved to 6.5 mg, he has a flare and spike in his labs. The numbers weren’t so had, but his rheum has him testing every 2 or so weeks—we don’t make a decision on whether or not to taper until after we have labs and consider his symptoms, and after much experimentation, we’ve realized this helps minimize the impact of flares.

I think he went back up to 10 mg until he was stable. Then, he alternated 10 and 7.5 mg. Then 7.5 mg, then alternating 7.5 mg and 6.25 mg, and then to 6.25 mg daily where he is now. (The weird numbers are in part because of the demonizations of tablets we have at home.)

Sorry if I’m rambling…

For your other questions, my dad has been taking LDN (low dose naltrexone) since a few months into his diagnosis. I proposed it because I take LDN for chronic pain conditions, and it helps me most with fatigue. My dad gets severe fatigue from the PMR, and it still was persistent even with reduced pain and inflammatory markers within normal range. It seems to help him, but we can’t be certain how much it’s impacting his LDN.

I don’t know that we’d use it to replace prednisone or a dmard like methotrexate. In my situation, I have a different inflammatory arthritis and central sensitivity syndrome. We hoped the LDN would improve my pain and pain sensitivity, in addition to the fatigue but I don’t really feel it’s has an impact on my pain.

I’d be afraid of methotrexate too, but it sounds effective from what others have said. Prednisone seems bad enough though and my dad is so sensitive to medication. Thankfully, we’ve not had to consider anything else.

Maybe you won’t need it after you’ve been a little while at an increased dose. Or, do you think you might be a candidate for the new biologics that have been recently approved for PMR? It sounds like others have very good experiences with them.

It does take some time to get over a flare like what you’re describing. It doesn’t mean you won’t get back to where you were, but your body just needs some time. Usually, my dad’s flares last no more than a week.

I’m hoping yours resolved sooner too and you’re able to settle in a combo of treatments that works well for you.

Happy to answer other LDN questions if you have any.