PMR relapse symptoms

@elsbeth My rheumatologist advised taking 2 mg of prednisone a day, like forever, I guess. I had osteoarthritis (from my dad) before I got PMR (from my mom). Lucky me. After getting off prednisone and feeling fine for a couple of months I now take Alleve (naproxen) for the aches and pains. I'm giving PMR a year to scram. Not sure what I'll do if this gets worse. I'd be happy if they just did more research on prednisone and made it a less destructive drug.

@54pontiac sounds like a good plan.
Yes agreed about Prednisone. Wouldn’t that be nice!

I was diagnosed with PMR 2 and a half years ago, took prednisone and then Kevzara. Have been off all meds and pain free for six months but am in pain again. Inflammation markers up slightly but still in normal range, but the other symptoms are back. This is depressing. Also some neuropathy in my feet. I realize I am lucky -- I am 88 and this is my first major health hit.

@paulagcl so sorry this is happening again.
Are the symptoms as bad as the first time?

Someone sent me this link today and it’s really good information for those coming off steroids.
https://canadiancentreforaddictions.org/prednisone-withdrawal/

@vjm0223

Excellent!!! Thank-you for posting this link. I think there should be warnings when treatment with Prednisone is initiated. The warning should read that we should listen to our doctors who want us to taper off Prednisone as soon and possible. Also, we should only take the "smallest effective dose" and for the "shortest time possible" for PMR/GCA.

I was guilty of listening to internet advice which said increase my Prednisone dose for "niggles of pain" and Prednisone for the "rest of my life" if needed was acceptable. There are some conditions like "primary adrenal insufficiency" where lifelong Prednisone is appropriate.

Sadly ... long term prednisone to treat PMR/GCA often results in "secondary adrenal insufficiency" which makes it very difficult to taper off prednisone. I didn't need any encouragement to take more prednisone for any longer than I already did. I took prednisone for 12 years for PMR which wasn't exactly a success story.

It wasn't that I was "addicted" to prednisone. However, my body was telling me that it "depended" on me to take prednisone.

I didn't find out that my adrenals would be slow to respond and might not make enough cortisol again until 10 years after my first dose of Prednisone. I don't know which condition is less poorly understood --- PMR or secondary adrenal insufficiency from long term Prednisone.

@vjm0223 great article!
and why aren’t doctors referring us to any of this information?

Maybe some would if we posed the question.
I find the pharmacist gives me more information than the doctors.

@vjm0223 This is a fantastic article! Thank you so much for sharing it. I have gone down from 20mg to 2 mg in 11 months. I was doing very well until now. This article takes away all the mystery. I am printing it to use a reference. Thank you again!!!

@abbeyc because we don’t know what we don’t know.
But I have been asking my rheumatologist why I have pain after tapering off Prednisone. Along with a long host of of other doctors.
Her last answer was keep doing what you are doing which is pursue each type of pain or ailment with each type of other medical specialist. Neurologist. Orthopedist. Endocrinologist, masseuse , hormone specialist ….