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I’m Not Responding to Prednisone and I Need Advice
Polymyalgia Rheumatica (PMR) | Last Active: Nov 24, 2023 | Replies (72)Comment receiving replies
@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
Replies to "@cliffg26 If you don't mind me asking - How old are you and where do you..."
I’m experiencing the same. I’m at 25 after 2 months starting at 15 and moving up 17.5, 20, 25. I guess 30 would be my sweet spot but I’m very nervous to be taking these high doses for so long. I’m losing my hair and that’s a minor problem compared to other effects. Do you mind if I ask if you have been able to taper down from 30 and if so how long did you stay at thirty? What mg are you at now? Thanks. I’m kind of on my own with this for now. My rheumatologist won’t let me go above 17.5 so I will run out of meds eventually.
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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.