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If you have tapering problems below 5 mg this might explain why.
Polymyalgia Rheumatica (PMR) | Last Active: Sep 21 6:06pm | Replies (19)Comment receiving replies
Sadly ... we are told to take prednisone for more than a year for PMR. Then the following happens ... I like to say we hit a brick wall over and over again when we attempt to taper prednisone too quickly.
"Recovery of the pituitary-adrenal response after use of a suppressive dose for more than one month will take about one month. Generally, this one for one recovery time is typical up to about 9 to 12 months, when recovery will often take up to a year or may not occur at all. "
We are told to taper off prednisone as fast as possible by the medical community. Forums like this and others promote an ultra slow taper. We receive conflicting advice because we can't do both. The dead slow nearly stop (DSNS) tapering method sends the wrong message and needs a new name in my opinion. Sometimes that slow of a taper is all we can do.
I discovered the biologic I take allowed me to taper my prednisone quickly and didn't suppress my adrenal function. My endocrinologist said if I could maintain a 3 mg dose of prednisone, it was low enough for my body to sense a low cortisol level. When I reached 3 mg of prednisone it was a "full stop" in my taper because my cortisol level was low. The hope was my adrenals would eventually recover and produce cortisol again.
My adrenals recovered but it took a long time. As long as my cortisol level was adequate and remained adequate, my endocrinologist said I could simply stop taking Prednisone if PMR was under control. She said I didn't need to taper Prednisone from 3 mg to zero when I had an adequate cortisol level. My biologic was controlling PMR so a flare didn't occur.
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You can't expect your adrenals to work again at higher doses of Prednisone because of the following:
"... low levels of cortisol are the only trigger to the pituitary to stimulate the return of ACTH production and the restoration of normal pituitary-adrenal responsiveness."
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The above was my personal experience and how I managed to get off Prednisone after trying for more than 12 years of PMR.
Replies to "Sadly ... we are told to take prednisone for more than a year for PMR. Then..."
oh my gosh. this is the most helpful comment I have read on any forum. I am 7 years on prednisone and really feel my PMR might be gone but every time I go lower than 2mg. I have pain everywhere. but it always feels slightly different than the original PMR. so I go to 1.5mg and suffer have stayed there 2 months before giving up and going back to 3mg. and dropping to 2mg. again and being fine. Have thought I might go on forever. Had one doc say that I had to get off and offered me sulfasalazine...which treats RA and Colitis. so I did not want it. what type of biologic did you take? thanks so much.
At 3mg. How were you able to go “full stop” off steroids if your adrenals weren’t working?
Sorry. I’m a bit confused on how you handled this. The fatigue and any flares
Also do you need to take the biologic for life ?
This is what is happening to me too…I’m having a very hard time staying at 10 mg of Prednisone even while having weekly shots of Actemra…the pain while walking never goes away ,my knees are swelling up with the slightest of activity and I can’t seem to wake up …I’ve been a month at 10 mg and plan to go to 9 next week regardless of how I feel as it doesn’t seem to be good at 10 so may as well just suffer through and get off it. The first 3 days after Actemra shot are my best then I slide downhill until next shot …hoping the space of feeling better will lengthen .
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What biologic were you taking?