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PMR - What do you wish you had known . . .
Polymyalgia Rheumatica (PMR) | Last Active: 12 hours ago | Replies (72)Comment receiving replies
@tweetypie13 Yes - I started Kevzara on May 18. So I've had 3 doses in total (every other week). One more coming up next week.
Not sure I've seen any improvement, and my rheumatologist feels it's too soon. I did try to back off the prednisone but 13mg seems to be my minimum right now.
Going to try the week after next to dial back 1mg every other day (12mg, 13mg, 12mg, etc.) She said try that for a week or two. Then stick with 12 for a week, until after the next shot.
Initially, she didn't seem to be on the same page - rushing to get me off - and that didn't go well.
Replies to "@tweetypie13 Yes - I started Kevzara on May 18. So I've had 3 doses in total..."
@grownupcf
For what it’s worth, the rheumatologist who put me on Kevzara said not to taper for the first 90 days until the Kevzara was fully at work. Then he said to taper at the rate of 1 mg a week which seemed unusually aggressive, but it worked.I followed that advice. I am no longer on prednisone for which I’m grateful. I was advised to stay on Kevzara for a year before beginning to taper off it.
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@grownupcf ….Ok, breathe, and wait. Kevzara can take up to 3 months to kick in. I was at abt 8-10 mg of prednisone when I started Kevzara. I was able to taper off prednisone totally by 3 months after starting the Kevzara.
I have no other health issues to deal with.
I’m sorry, if the following is a repeat, I don’t recall your history.
Have you passed thru the cortisol stage? That will have a slowing effect on your tapering. Is it PMR or cortisol issues? Here’s a bit from AI
“ Tapering Challenges: When patients undergo long-term steroid treatment, natural cortisol production can slow down or temporarily stop. As the steroid dosage is lowered, the body must adjust, leading to symptoms that can feel like a PMR relapse.”
As for tapering….. my drs advice was not to drop more than 10% at a time….stay at that dose until pain free for at minimum 2 weeks before tapering again .
As I got lower it was harder to taper (sometimes only .5 taper) and I stayed at steady pace until I was truly pain free.
Kevzara did help me, but getting there is still a journey.
Rushing won’t help PMR leave your body, our ultimate goal.
As for Kevzara, their website is pretty good with info.
Keep asking questions……we all learn.