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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Jan 27 8:38am | Replies (1879)Comment receiving replies
Hello @rkprice, Sorry to hear you have been struggling with your PMR and tapering off of prednisone. Prednisone was the only drug I used with both of my occurrences of PMR but it was tricky tapering off and you are doing it the best way - slow and easy. I started both occurrences at 20 mg prednisone and took 3-1/2 years to taper off the first time and 1-1/2 years the second time. There is another discussion where you learn what others have shared about their experience with Tocilizumab.
- Actemra (Tocilizumab) to treat PMR??: https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/
One thing that really helped me for both occurrences of PMR was keeping a daily pain/dosage log for prednisone. Did your RA doc provide a tapering schedule for you?
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Yes, re: RA providing scheduling. We were more aggressive at the start of tapering (and I think my RA had a strong belief the methotrexate could fairly quickly impact my need for prednisone) which probably contributed to the first couple of tapering attempts not going that well. We talk every three months or so and she encourages me to slow the tapering if I feel the PMR is surging. I was glad to get below 10 - I began to be able to get the extra weight off and said good bye to my swollen face. Thanks for your interest and the link to the Tocilizumab discussion.