I keep relapsing when I try to get off prednisone

Posted by yeb @yeb, Jun 22, 2024

I was diagnosed with PMR in 2015. I keep trying to get off prednisone but every time I get to 4mg I relapse and have to go back to 15 or 20 and start over. Very discouraging. I want my life back. I have tried weekly methotrexate with the prednisone but it does not seem to help. Any suggestions would be greatly appreciated!

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jsue | @jsue | Jul 18 2:10pm

Have your doctor check your blood cortisol level. That was my problem..Am now taking efmody and kevzara.

Mike | @dadcue | Jul 18 2:42pm

@jsue

Efmody (modified-release hydrocortisone) is not currently FDA-approved or commercially available in the USA. I'm interested in knowing how it works for you.

Kevzara is showing promise as an alternative to prednisone to treat PMR and is FDA approved in the USA.
https://www.everydayhealth.com/rheumatic-diseases/fda-approves-steroid-free-drug-polymyalgia-rheumatica/
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More details about your personal experience with these two medications would be appreciated. Did you have prednisone induced adrenal insufficiency? This is a huge problem when people attempt to taper off prednisone and there doesn't seem like much can be done about it.

kobellava | @kobellava | Jul 19 11:07am

My Aunt has been on 4 mgs for PMR for over 20 years. She's 90 and very active. My doctor said sometimes a maintenance dose is needed. He said 5 is acceptable too. Maybe get to 5 and stay for awhile and drop 1/2 mgs. I'm at 6 mgs after 2 flares from GCA and taking it very slow.