1. < Polymyalgia Rheumatica (PMR)

Fast Prednisone taper?

Posted by rocksology @rocksology, 6 days ago

Because of the heart and kidney issues I'm experiencing I need to taper off the prednisone fairly quickly. April 28th I was on 12.5 mg and was diagnosed with HFpEF heart failure and my cardiologist said it is from the prednisone. She wants me to taper as fast as possible but didn't know what schedule. My PCP doesn't know what is safe either. (sigh) I don't have a Rheumatologist at this time.
I went from 12.5 on April 28th to 11.25 on 4/30, down to 10mg on May first, 9 mg on 5/5, then 8mg on 5/6. Lowered it on 5/8 to 7 mg and stayed there until 5/13 when I went down to 6mg, and yesterday, 5/16, I went down to 5mg. I'm hoping to go down to 2.5 mg on Wednesday and be off of it by next Sunday.
I am experiencing dizzyness, exhaustion and a little nausea along with the return of pain. I'm hoping I am not going too quickly for my adrenal gland! Any thoughts?
Terri

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Mike | @dadcue | 3 days ago
In reply to @gmdb "That's a great result, and yes, really doesn't seem there was a need for kevzara at..." + (show)
@gmdb

That's a great result, and yes, really doesn't seem there was a need for kevzara at all. I am unfortunately in a relatively small group (I believe) that has some resistance to the effects of pred, so need much higher doses to keep the inflammation under control.

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I took prednisone for 12 years for PMR. After 12 years it was decided that I had "refractory PMR." For refractory PMR an alternative to prednisone is needed.
https://www.the-rheumatologist.org/article/how-to-treat-refractory-polymyalgia-rheumatica/
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I had very little resistance to the effects of Prednisone. I gained weight, developed cataracts, hypertension, secondary adrenal insufficiency and many other Prednisone side effects.

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neztrop | @neztrop | 2 days ago

Terri,
Really sorry to hear about your heart issues and prednisone. I certainly get the need for a quick taper. Yours does seem really fast. Your symptoms don’t surprise me for such a fast taper. Can u get a second opinion? Hang in there.

Good luck!

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rocksology | @rocksology | 2 days ago
In reply to @gmdb "You may not be getting much pain if your PMR has desisted and the inflammation it..." + (show)
@gmdb

You may not be getting much pain if your PMR has desisted and the inflammation it causes has gone. That would be a great result, and the minor pain you are getting may be simply from withdrawal. But the issue of adrenal insufficiency and the potential for adrenal crisis always remains at the low pred doses if you have been taking the medication for a long period. How long were you taking 5 mg or higher?

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I started on 20 mg January 22nd, and was on that for about 4 weeks. I was tapering by 1/2 mg every 2 weeks until my heart and kidney diagnosis in March. March 8th I was at 15 mg. On April 28th I was at 12.5 mg. Today I’m at 4 mg, so I dropped 8.5 mg in 23 days. I was on over 5 mg for over 100 days.

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1 reply
jeanrod825 | @jeanrod825 | 1 day ago

I started at 80 mg prednisone in October and now down to 10 mg. Last month I was dropped from 20 to 10. This fast tapering is really hard. I go back in June and hopefully she will drop me a little slower. I do not have PMR but temporal arteritis or vasculitis. Best of luck to you. Prayers and hugs to you.

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art43 | @art43 | 20 hours ago
In reply to @rocksology "I started on 20 mg January 22nd, and was on that for about 4 weeks. I..." + (show)
@rocksology

I started on 20 mg January 22nd, and was on that for about 4 weeks. I was tapering by 1/2 mg every 2 weeks until my heart and kidney diagnosis in March. March 8th I was at 15 mg. On April 28th I was at 12.5 mg. Today I’m at 4 mg, so I dropped 8.5 mg in 23 days. I was on over 5 mg for over 100 days.

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At 4 mg, a reminder to be alert for the symptoms of adrenal insufficiency and/or adrenal crisis, and to have a plan to deal with either expeditiously. Good luck, rock.

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ht123 | @ht123 | 12 hours ago
In reply to @susanalka "I’m wondering, has anyone successfully tapered by 1mg instead of .5 , specifically when your dose..." + (show)
@susanalka

I’m wondering, has anyone successfully tapered by 1mg instead of .5 , specifically when your dose is less than 7mg?

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I tapered in 1mg increments between 10mg and 5mg; 4 weeks at each dose. No problems. But getting below 5mg I needed smaller reductions. I've heard that ideally no reduction should be more than 10%, or possibly 20%. I'm currently doing a slow taper from 2.5mg to 2.25mg

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