I’m Not Responding to Prednisone and I Need Advice

Based on all the excellent feedback I believe either I don't have PMR or my prescribed dosage is too low. I'm slowly getting worse, so something has to be done. I've been taking 20 mg per day, so I'm going to insist trying a higher dose. The Mayo Clinic says the initial range can be from 5 - 60 mg per day. Thanks for all the suggestions.

"The Mayo Clinic says the initial range can be from 5 – 60 mg per day."

This depends on the condition being treated. PMR isn't treated at the high end of this range. The initial PMR started dose is somewhere in the middle.

Thanks for the info. I'll keep that in mind.

Cliff, please try to see a rheumatologist as soon as you can. Going untreated, PMR can lead to far more serious consequences.

I couldn't take being treated like that, so I went to Academia. Emory is close to me and OMG what a difference.

I didn't know that, and it may be a serious problem. It's possible the only reason I was diagnosed with PMR was because I went to a different doctor. So I know when I was first diagnosed with PMR, but that's not necessarily when I first developed it. I've been dealing with similar pain for about twenty years.

I have access to my lab results through a Patient Portal. Another weird thing is my CRP numbers. My most recent one is 14.6 mg/dl on 9/18/23. Normal is less than one. Is that related to my PMR?

Elevated CRP is an indication of inflammation and normally what they look for if you are diagnosed with PMR. Here's more information on the tests.

--- Erythrocyte Sedimentation Rate and C-Reactive Protein: Old But Useful Biomarkers for Pain Treatment: https://www.practicalpainmanagement.com/treatments/erythrocyte-sedimentation-rate-c-reactive-protein-old-useful-biomarkers-pain-treatment

Cliff, I hope you are feeling better. I am also not getting enough relief from prednisone so I’m up to 25 mg after 2 months at lower doses and still wake up with pain. I’m just wondering if your pain has subsided at all. This is making me very nervous. Good luck.

@cliffg26 If you don't mind me asking - How old are you and where do you live ?? If you are in a situation where your PCP will not increase the dose of prednisone i would call the rheumtaologist office and relate that message and do whatever you can to get an earlier appointment ! You should be able to get to a dose that honest to God-MIRACULOUSLY- relieves the morning stiffness - this is in general a hallmark of PMR!

you asked for advise so here goes ---1) if you are not keeping a pain journal or spreadsheet , start one. Be more specific* about what you are experiencing -- do you have morning stiffness in BOTH shoulders and hips ? For me, when at a SUB_OPTIMAL dose - after waking i could go outside and take a short walk , but the shoulder stiffness was very persistent. I gauged by whether or not i could put my hair in a ponytail ( ie lifting arms above head)
2)Try splitting your dose ! doing that was a game changer for myself and i first saw that suggestion on this site !! SO Increasing from 20 to 30mg did the trick for me - splitting the dose !
3) Be aware that you are dealing with an immune cell-mediated pathway and the glucco-corticoids are working to supress your immune system**
4) how much research have you done ?- at a minimum take a look at this website slides and videos - PMRandIL6.com
*i found this manuscript below early on- the fact that other people described EXACTLY what i was experiencing , particularly during one flare -up - was very relieving !
** i love this figure from Lunberg et al 2022