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Polymyalgia Rheumatica (PMR) | Last Active: Nov 11 9:29am | Replies (30)Comment receiving replies
When and how did you switch to the biologic? Did you start with prednisone and biologic together then taper off the prednisone? I’m curious if it’s really necessary to go thru the whole extended, and sometimes endless prednisone tapering process before trying the biologic. Any PMR type flares on the biologic alone? Thanks.
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@brerabbit
My biggest regret was that Actemra (tocilizumab) wasn't tried sooner. When my rheumatologist told me that taking prednisone for the rest of my life wasn't a good outcome ... I was skeptical because Prednisone was a huge part of nearly half of my life already.
I took prednisone for 12 years to treat PMR alone. That doesn't count the 15 years of prednisone before PMR was diagnosed.
The first 15 years of Prednisone were for the treatment of other autoimmune conditions and not PMR. During those 15 years, my Prednisone use was characterized by high dose (60-100 mg) followed by a fast taper off Prednisone -- usually within a month. I didn't have many problems with side effects except for cataracts when I could taper off prednisone quickly.
PMR was diagnosed in addition to my other autoimmune conditions. My rheumatogist said I would need Prednisone "long term" which turned out to be more than 12 years. "Relapsing PMR" meant I couldn't get anywhere close to zero Prednisone before a relapse would occur. It became an "endless prednisone tapering process."
For my other autoimmune conditions that wasn't the case. Remission was achieved quickly and I tapered off quickly. Relapses happened but there would be a year or two between relapses when I didn't need any Prednisone.
I don't know how many PMR relapses happened before the biologic was tried. For all I know ... the relapses might not have been a PMR relapse. When Actemra was used to control my PMR symptoms, I quickly tapered down to 3 mg of Prednisone. That was when I was informed that I had a low cortisol level and would need to stay on 3 mg of Prednisone for an "extended period of time."
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I think a year or two of Prednisone might be okay for the treatment of PMR before trying a biologic. After that amount of time was when I started to have a serious decline in my overall health and well being. After a year or so was when numerous other medications were added to treat Prednisone side effects.
After about 2 years was when "steroid sparing" medications like methotrexate were introduced but methotrexate "failed." I couldn't understand why methotrexate, leflunomide and the like were only allowed one relapse failure before they were discontinued. Prednisone was allowed many, many relapses but could never be stopped until Actemra was tried.
After Actemra was started ... it took me slightly more than a year to taper off Prednisone. Most of that time was because my cortisol level was too low to discontinue Prednisone.