← Return to low dose (1-2mg) prednisone indefinitely

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"Indefinitely" doesn't mean staying on a low dose of prednisone forever or for the rest of your life. Your struggle to stay on a low dose might be because your adrenals aren't producing enough cortisol to regulate the inflammation caused by PMR.

I think staying on a fixed low dose (3 mg or less) of Prednisone for an "indefinite period of time" was the final step for me to taper off Prednisone. The idea that I shouldn't attempt to taper lower than 3 mg was a foreign concept to me. It was what an endocrinologist told me to do when my 9 o'clock a.m.cortisol level was too low to taper any lower than 3 mg.

I had to wait 6 months for my adrenals to start producing "adequate" cortisol levels again. That is the indefinite part because for some it could be less than 6 months. For other people it could be longer than 6 months.

For me to stay on 3 mg of Prednisone was impossible until I started Actemra (tocilizumab). Without Actemra the pain for start up again and 10 mg and then then my level of pain would be top much at 7 mg.

I remember someone told me that Actemra "does nothing" that helps the adrenals to recover. I think they were wrong about that. It wasn't what Actemra did to stimulate my adrenals. It was more about how Actemra allowed me to stay on a 3 mg of Prednisone so that my adrenals were not totally suppressed by prednisone.

The endocrinologist I saw didn't know how long it would take for my adrenals to show signs of recovery. I think my adrenals only made a "partial recovery" when I was still on 3 mg of Prednisone. I think a "full recovery" happened when Actemra allowed me to discontinue Prednisone without a PMR flare.

I think it involves keeping PMR inflammation under control while we stay on a low dose of prednisone. For me Actemra did a nice job of keep PMR under control but maybe some other steroid sparring medication might also help with that too.

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Replies to ""Indefinitely" doesn't mean staying on a low dose of prednisone forever or for the rest of..."

@dadcue
Neither my rheumatologist or pcp has an interest in ordering a cortisol test. I might have made an appointment with the endocrinologist I was seeing but she retired and right now I'm not interested in involving another Dr..
For now I'll just stay at 2mg til Aug.
Copay and possible side effects of biologics are keeping me from that route. Plaquinil and MTX have been ruled out.
I am not problem free right now but may be as good as I can get. Some of these old age aches and pains are just not gonna go away.
The ole 'one day at a time'
I am curious though how many people are low dose indefinitely.