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What was your experience on Kevzara?
Polymyalgia Rheumatica (PMR) | Last Active: 10 hours ago | Replies (181)Comment receiving replies
Maybe you will need Kevzara "long term" --- but not always.
The general idea is to taper off Prednisone within the first year and then to wean off of Kevzara during the second year.
It didn't work that way for me. I have been on Actemra (tocilizumab) for 7 years. My last dose of Prednisone was more than 5 years ago. My rheumatologist has no current plan to stop Actemra although we have tried in the past.
At least my side effects from Actemra are minimal compared to the side effects I had during my 12 years on Prednisone. After my first year or two on Prednisone, my rheumatologist wanted me to taper off Prednisone except I couldn't.
The nice thing now is that my rheumatologist never tells me I need to taper off Actemra. I could stop Actemra but I'm not dependent on Actemra because it doesn't suppress my adrenal function.
I'm usually asked WHY do I want to discontinue Actemra because it is working well. I don't have any PMR flares anymore AND my adrenals are no longer suppressed.
Replies to "@eparnold0219 Maybe you will need Kevzara "long term" --- but not always. The general idea is..."
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@dadcue
We are all different, but good to know what others are going through and the length of time this might take@! So helpful! Actemra is a potential drug in my future but you are the first one I read to mention it. So helpful annd best wishes to you!