← Return to Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Discussion
Comment receiving replies
@johnbishop

Hi @vjs, When it comes to PMR I don't think there is a one size fits all normal treatment. My own experience having PMR twice was being started on 20 mg prednisone for both occurrences and directed by my rheumatologist to taper slowly and listen to my body for when and how much to taper. My first time took 3-1/2 years to taper off. The last six months was going back and forth between 1 mg and 1/2 mg until I could finally stop taking prednisone and not have morning pain at a level I considered too much. For me that pain level is between 1 and 2 and it usually went away after moving around some after waking up. Six years later the PMR came back and it took me 1-1/2 years to taper off. Of course I was a lot better with my lifestyle and eating habits the second time around which I think made a difference.

Do you keep a daily log of your pain level when you get up and your dosage of prednisone for the day? That really helped when deciding when I should or shouldn't taper and how much to taper down.

Jump to this post


Replies to "Hi @vjs, When it comes to PMR I don't think there is a one size fits..."

Yes, PMR is individual… first time got off prednisone in 1.5 years…. But even with that “short” time it cost me….. glaucoma, hypertension, weight gain and a worsening of osteopenia. So round 2 with methotrexate. Takes a long time to see improvement but it gradually is getting there. Bottom line for me: if the pain is at or below 5/10 it is a good day for me and I’ll take it. Remember, PMR isn’t good, but frankly there are many other things far worse out there.