low dose (1-2mg) prednisone indefinitely

Posted by pmrsuzie @pmrsuzie, 7 hours ago

This may be where I'm headed.
I last saw the rheumatologist in Feb and was at 3 mg. I was instructed to alternate between 3 and 2mg. My next appt is in Aug. I started that plan but gave up on that taper and alternated 3 and 2.5mg and then 2.5 and 2mg. It was a real struggle getting to 2mg. Tapering has seemed to aggravate my Meniere's symptoms along with hip pain. I'm staying at 2mg til I see him. I guess there is some logic to the 3-2 alternating???? There does not really seem to be a science to tapering imo. How many pmr patients actually end up on low dose (1-2mg) prednisone indefinitely? Saw my pcp this week and she said "just stay at 2 mg". I started this in 2019.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

seniormed | @seniormed | 6 hours ago

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.

John, Volunteer Mentor | @johnbishop | 6 hours ago

@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/

Mike | @dadcue | 4 hours ago

"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.