ACR Convergence 2023 Nov -Program abstracts are available for view

Speaking of the annoying side effects of prednisone, the most annoying side effect to me is muscle problems. I've been a runner for almost 50 years, but now if I even think about running a muscle in my legs will strain. So I've had to give up on strenuous exercise for the time being.

Also, this side effect might be minor, but it really annoys me, and that's the taste and smell of prednisone. I taste it almost constantly. It's kind of metallic, and also kind of medicinal. Plus I smell it fairly often on my skin and in the air around me. It might just be a problem with my sense of smell being affected by the prednisone.

I'm currently at 10 mg a day, having tapered down from 60. The muscle problems started once I got under 20 mg a day. I don't know why they started then. Maybe it was just the amount of time I had been taking prednisone, or maybe the cumulative dose.

Jeff97
Side effect of Prednisone, a bitter metallic taste?
How odd , me too I’ve not heard anyone else mention or complain of this . The constant taste in my mouth has put me off some of the foods I used to enjoy, as well as red wine ( and I don’t drink white wine or any other alcohol really)
I suppose being off alcohol because of prednisone is a strange but positive side effect.
Cheers to a dry 2025 .

"Dr. Spiera suggested that clinicians consider that PMR is not organ or life threatening, and its disease flares are manageable." "...he advised clinicians to plan a rapid glucocorticoid taper (to zero by month four)".
Flares with fast tapers are "manageable"? How, mate? By raising the dose of steroids again and increasing the cumulative dose? Not keen on that idea.

HI @megz ha ha -- I went back to the webinar and that is what he ( Dr Sattui) said , some patients can manage the fast taper. I wrote down that at about minute 57 is when he begins to mention the aggressive taper.

@nyxygirl Thank-you for the article about the debate doctors are having. I was good to read and the debate needs to happen.

I'm just weighing in with my opinion which is based purely on personal experience with Actemra. Someone else's mileage may vary and I don't think Actemra or Kevzara will work for everyone.

Trying an IL-6 inhibitor was a game changer for me. I was able to taper off prednisone in one year as compared to trying to taper off prednisone for 12 years without Actemra.

I think prednisone should be used first simply because it works so quickly and provides fast pain relief. Then it just depends on how the tapering process goes. The goal should be to taper off prednisone as quickly as possible. I don't think there is any magic tapering strategy that works for everyone. Promoting long term prednisone use waiting for PMR to "burn itself out" isn't wise.

For most autoimmune conditions, prednisone is used as a "bridge" to more effective treatments with fewer side effects than prednisone. As long as the "prednisone bridge" isn't too long and the side effects aren't too bad, then people should probably continue on the bridge until they are off prednisone.

My 12 year prednisone bridge was entirely too long. A person who took the same bridge before me said it led her to an adrenal crisis. She warned me to turn back before it was too late.

When my cortisol level was found to be low, it explained many of the symptoms I was having. Adrenal insufficiency was not a good place for me. The overwhelming fatigue and inability to taper off prednisone was doing bad things to me.

Actemra allowed me to decrease my prednisone dose to a low enough dose to allow for the adrenal insufficiency to be exposed. After that, an endocrinologist stepped in and provided some insight into ways to get off prednisone. Time and maintaining a low prednisone dose of < 3 mg for more than 6 months was what it took to regain an "adequate"cortisol level. Only when my cortisol level was adequate was I able to discontinue prednisone. Fortunately, I didn't have complete adrenal failure.

Once I was able to get off prednisone, it took even longer for my adrenals to produce enough cortisol to regulate inflammation on a full time basis. This happened while Actemra enabled me to remain off prednisone.

As far as I know, PMR is now in complete remission. I don't think it is waiting to flare up again like it did whenever my prednisone dose got too low. I don't know why my rhematologist is so reluctant to stop Actemra. I haven't got answers to that question other than my rheumatologist doesn't want to rock the boat too much.

Whatever boat I am currently in, it is getting me to where I want to go. Things are going much better going by boat compared with trying to cross that prednisone bridge.

It has been smooth sailing so far on Actemra but I'm still not sure where the journey will end.