I’m Not Responding to Prednisone and I Need Advice

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.

I increased mine from 5 to 10 without the Drs. permission (missing in action) and on the 2nd day the morning pain was easing up. This is the forth day pain is not all gone but what a difference. Just got to figure out my strategy with the Dr.

Hello @cliffg26, Welcome to Connect. There are several conditions that mimic PMR. I'm not a doctor but it might be as simple as you don't actually have PMR. Here is more information that explains it much better than I can.

--- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

"If there is not adequate improvement with an appropriate dose of prednisone within one to two weeks, reconsider the diagnosis. If clinical suspicion for PMR remains, consider trialing a higher prednisone dose (usually up to 30 mg) after discussing with the local rheumatology service."
--- Polymyalgia rheumatica (PMR) – look before you leap: https://bpac.org.nz/2023/pmr.aspx

Do you think it might be possible to see if you can get an earlier appointment with the rheumatologist or get on a waiting list in case of an appointment cancellation?

@johnbishop HI John -- that is a nice summary in that New Zealand website -- similar to "up to date" dot com https://www.uptodate.com/contents/clinical-manifestations-and-diagnosis-of-polymyalgia-rheumatica.
I have used my work log-in to Nature publications to download recent manuscripts from Nature Reviews Rheumatology dealing with management of PMR and GCA -- 2 SubjectMatterExperts are surely : Christian Dejaco and Eric Matteson (from Mayo Clinic! ) i will attach the 2023 article here and also in the channel i started about teh upcoming ARC meeting in Sandiego !
Cheers - maria

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

Thanks very much for the advice. I'm 76 years old, and I live on the west side of Puget Sound in Washington State. I increased my dosage from 20 mg to 30 mg a few days ago, and I feel better, but I haven't experienced the miraculous benefit many people report.

My left shoulder and elbow have been effectively useless since last spring, but now I can move my left arm around a little bit, and I can use my left hand. I do split my dosage and take 20 mg in the morning and 10 in the evening. I'm actively looking for a new doctor and rheumatologist.

@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

Is weight a factor with Prednisone dosage? Should a 300 lb person take twice as much as a 150 lb person?