low dose (1-2mg) prednisone indefinitely

You can manage a low dose long term.
Be aware of measures to prevent and minimize side effects.
Check your BP at home and consider a glucose meter
to check monthly as well.
Take your vitamin D and calcium, walk and do mild resistance exercises.
Protect your skin with moisturizer and sunscreen.
Know your labs and make sure you are attending to
a cardiac risk evaluation.
My cardiologist started me on statin for the risk of
chronic systemic inflammation. Diet is important.

U

@pmrsuzie - You might want to look at this discussion started by @dadcue if you haven't already seen it.
-- If you have tapering problems below 5 mg this might explain why.: https://connect.mayoclinic.org/discussion/if-you-have-tapering-problems-below-5-mg-this-might-explain-why/

"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.

@johnbishop
Thanks, I will do that

@pmrsuzie

The link stopped working in the old thread that @johnbishop posted. I think the information was moved to the following link.
https://www.nadf.us/sai
--------------
Maybe John can fix the link in the other thread.

@dadcue
I haven't looked yet.

Thanks Mike! @dadcue - updated the link so should be working again.

@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.

As I have noted on this blog many times, I have been on and off prednisone (P) for 35 years. Mainly on, and I feel it is a magical drug. I went on Kevzara nearly 2 years ago when I was 15 mg P and easily tapered down to 2.5 mg. Going lower caused pain and I tried. I may be on P for the rest of my life and the life tables say I have 10 more years. I am 80. I am sure I am an outlier in the amount of exercise I do since I have been playing tennis at a competitive level since 12.

@pmrsuzie

It is an interesting question to ask how many people are on a low dose indefinitely. It implies they can't imagine tapering off Prednisone or maybe they have lost hope. I know that I lost hope at one stage.

The following abstract addresses your question. The conclusion was interesting. I will paraphrase it :

The higher the starting dose and the longer the duration ... the less likely it is for someone to have a "successful discontinuation" of prednisone. The significance of the starting dose diminishes after 24 months. Perhaps this means that many people don't get off prednisone?
https://www.the-rheumatologist.org/article/study-probes-corticosteroid-dependence-in-polymyalgia-rheumatica/
"The clinical course of PMR is characterized by prolonged corticosteroid use, with a discouraging rate of successful prednisone discontinuation."
--------------------------------
I remember 8 years after I was initially diagnosed with PMR --- I was still taking 25 mg of prednisone to control my pain . I wasn't sure if I still had PMR because so much of my pain wasn't like PMR was initially. It was very easy for me to lump together all the pain and say it was PMR.

After some of my pain was surgically corrected, I tapered down to 10 mg. At this stage I told my rheumatologist that I wasn't going to try to go lower than 10 mg. It took a lot of encouragement for me to keep trying.

What was not very helpful to me was being told that a low dose of prednisone for the rest of my life doesn't do any harm. I almost believed it but now research is saying even low doses aren't so good. Then I rationalized that since I was in my mid 60s already ... the rest of my life wouldn't be that long.

The question that has always intrigued me is how many people are still taking Prednisone when they die.