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Off Prednisone but still feeling new type of pain
Polymyalgia Rheumatica (PMR) | Last Active: 6 hours ago | Replies (154)Comment receiving replies
@linnead
Been there, know that feeling. Kevzara was/is my savior.
I resisted going on Kevzara too…..”not another drug in my body”
The Dr. neglected to tell me that Kevzara would help me taper off of the prednisone.
I was at abt 8 prednisone when I started Kevzara, takes 30-60 days to kick in.
I did a slooow taper off prednisone, and was off after 3 1/2 months. Today 10 months later, no other drugs. A, hoping the Dr. will stop the Kevzara at my next appt. Which will be my 2 yr anniversary of diagnosis.
Good luck…..search this blog for other stories on Kevzara.
Replies to "@linnead Been there, know that feeling. Kevzara was/is my savior. I resisted going on Kevzara too…..”not..."
"The Dr. neglected to tell me that Kevzara would help me taper off of the prednisone."
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My doctor didn't provide any guarantees. However ... the comment was that Actemra represented my "best chance of ever getting off Prednisone!"
My endocrinologist was less optimistic that I could get completely off Prednisone. She even conceded that I had "resilient adrenals."
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@tweetypie13
I received negative feedback on another PMR forum when I sought information about Actemra more than 7 years ago. My rheumatologist was dissed for suggesting such a dangerous drug when it was "well known" that Prednisone was the best treatment for PMR. One opinion was that doctors in the USA were "breaking the rules" by treating me with Actemra. I was risking very serious side effects from Actemra relative to the "manageable" side effects from Prednisone.
I would never trade my last 5 years of being off Prednisone with my preceding 14 years on Prednisone for PMR. I still have concerns that I haven't been able to discontinue Actemra. I'm approaching my 20th anniversary of my PMR diagnosis. However my medical records refer to decades (40+ years) of Prednisone use for all of my autoimmune disorders combined. Actemra seems to keep everything under control for me.