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Kevzara and Prednisone Tapering before and during Kevzara
Polymyalgia Rheumatica (PMR) | Last Active: Nov 7 12:17pm | Replies (100)Comment receiving replies
First set back with Kevzara K. I started K last October when I was on 15 mg/day of Prednisone J. Got down to 2.5 with no problem. When I went to 2 mg / day had a slight problem with pain 6 weeks ago. Then 2 weeks ago started 1 mg of P / day, more pain. Pain got severe so was put back on 2.5 mg/day. I am only relating this history to get others comments or stories about reducing P. The plan was to get to zero P.
Replies to "First set back with Kevzara K. I started K last October when I was on 15..."
@jfannarbor our time line is close. I started Kevzara January. I am down to 1mg as of two days ago. So far so good. That being said I continue to have a little tingy pain in back of arms. But I know my limits so not enough for me to increase prednisone
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Maybe if you could describe the pain relative to when you were first diagnosed. How well you can describe "pain" is very important at this stage. All pain is not the same and there are many reasons why we experience pain.
When I on Actemra and successfully tapered off Prednisone, it wasn't a straight path to zero. When I got close to zero .. I frequently oscillated between 1 and 3 mg.
When I actually went to zero the first time--I only stayed on zero for about 2 weeks before my ophthalmologist urgently restarted 60 mg of prednisone again. I consider that to be a "set back" ---- I won't go into details but the reason for restarting 60 mg had nothing to do with PMR or GCA.
When I was eventually successful at staying on zero Prednisone ... an endocrinologist said I should restart Prednisone for "any reason" if I felt the need, The endocrinologist said she didn't know what would happen after I stopped taking prednisone since I took Prednisone for more thaan 12 years for PMR. My adrenal function wasn't so good after that amount of time. I can safely say that a low cortisol level involves some pain too.
What I needed to relearn was that the concept of "no pain" is NOT very realistic. Pain is what "protects us" from harm! However severe pain is never so good.