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What justifies an increase in prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: Aug 8 6:17am | Replies (45)Comment receiving replies
I’m just so torn at jumping back to 10mg per dr and continue my tapering.
I’ve gotten down to 5mg starting July 28 and have managed with the pain. It’s not over a 2 yet but it will probably take longer to adjust than other dosages but it’s an unknown. Going back to 10 means my tapering goes longer. (At least that’s my presumption.)
What was the turning point that made you use a biologic?
I really can’t say I’ve had a flare unless that means some discomfort as tapering steps go. I have never returned to the original pain levels pre steroid.
I find it interesting that the pain locations somewhat change at each level. Used to really only be the upper arms toward shoulder but now I get some neck and lower back at times. Even my forearm and thing tingling decreased after starting during 6mg taper but has started up more when I started 5mg.
What a journey! I know mine has been short compared to yours. I’m glad things have worked out for you and that you share willingly.
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"What was the turning point that made you use a biologic?"
I didn't want to take Actemra. I was listening to the negatives more than the positives. I was interested in trying a biologic but I didn't know which one. I wanted prednisone in the beginning but that changed over time. I was getting frustrated with my rheumatologist because I wanted to be off prednisone. I somewhat accused my rheumatologist that she only prescribed prednisone to me because she thought it was what I originally wanted. I actually messaged my primary care doctor tactfully complaining that I was stuck with being on prednisone for the rest of my life. My primary doctor forwarded my concerns to my rheumatologist.
My rheumatologist thought I needed prednisone for PMR for a few years but she never wanted me to be on prednisone for 12 years. At the time, Actemra had been recently FDA approved for GCA but not PMR. My rheumatologist thought Actemra might be my "best chance" of ever getting off prednisone. My rheumatologist needed to do extra work to get Actemra approved. for me. I felt obligated to try Actemra because of all the trouble I was causing.
I wasn't so sure Actemra would work. I only tried Actemra to "get it over with so I could move on." I was full of pessimism and I didn't think Actemra would work to be completely honest. I just tried Actemra to prove to my rheumatologist that Actemra wouldn't work!
When Actemra worked ... I asked how my rheumatologist knew. My rheumatologist said it was a lucky guess. My guess was completely wrong. I now say their guess was better than mine because they knew more than me.