I'm currently doing Actema infusions for "refractory PMR." I was on prednisone for more than 12 years for PMR alone without ever being diagnosed with GCA. There might have been the suspicion of GCA but it was never diagnosed.

Since Actemra isn't FDA approved for PMR, my rheumatologist had to get Actemra approved for use in my case. Actemra was approved by a medical panel with the recommendation to treat me with Actemra "as you would treat a patient with GCA."

I am a hybrid of several autoimmune disorders. I was able to get off prednisone completely after Actemra was tried. My first attempt to taper off Prednisone was complicated while I did Actemra injections. My second attempt to taper off Prednisone was successful. I have been prednisone free for 3 years while doing monthly Actemra infusions.

I wouldn't say I'm healed because I still do Actemra infusions. I can say my quality of life has improved immensely since discontinuing prednisone. Being off prednisone makes Actemra worth it to me. However, my out of pocket expense doing Actemra infusions is $0 at the VA.

I was able to get off Prednisone and five other medications that were treating Prednisone side effects.

I recently stopped warfarin too. I was taking warfarin for life because of a massive, multiple and bilateral pulmonary embolism that was called "unprovoked." The pulmonary embolism was called idiopathic when I was on a high dose of prednisone during a severe infection. It took some convincing but I talked someone into discontinuing warfarin because I have been off Prednisone for the last 3 years without having any severe infections in a long time. My overall risk of another pulmonary embolism has decreased.