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How to Slowly and Safely Taper Off Prednisone but ... no set rules.
Polymyalgia Rheumatica (PMR) | Last Active: 1 day ago | Replies (65)Comment receiving replies
Thank you - that's very useful information. I would like to try Actemra and it is good to hear some success stories for it. But in Australia it's only avaiolabel for GCA or if you can establish the potential for GCA currently. Certainly at the beginning of my PMR I had symptoms that were rapidly becoming indicative of GCA but a higher dose of prednisolone eliminated that over a 6 week period. But after 18 months I am still at 15 mgs. I was at 10 mg and that was looking okay until the the CRP inflammatory markers shot up to 28.
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There was an "administrative process" for me to get approved for Actemra. My doctor did the paperwork and submitted medical justification. An inability to taper off prednisone was one criteria. A failure of all other treatment options was another.
My rheumatologist first made me commit to trying Actemra IF he could get it approved. I was told that Prednisone for the rest of my life wouldn't be a good outcome. My quality of life was rather poor at that stage. I didn't think the rest of my life would be very long.
I started Actemra 6 years ago and my quality of life has improved tremendously since being off Prednisone for the last 5 years. I will be doing a TransPacific cruise to Austrailia the middle of October through mid November. I will do my monthly Actemra infusion before leaving home and I'm good for 5 to 6 weeks until my next Actemra infusion. I was confined to a chair at home when I was on Prednisone.
When I travel, my doctor writes for a supply of Prednisone that I take with me "just in case."