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@debjohn67

I was just diagnosed with PMR. Taking 12 mgs of prednisone. Helped immediately. Dr. also put me on Fosamax once a week. Want to start me on Actemra infusion because I also have diabetes. Anyone else on an infusion? Thanks.

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Replies to "I was just diagnosed with PMR. Taking 12 mgs of prednisone. Helped immediately. Dr. also put..."

Hello @debjohn67, Welcome to Connect. @lindaf49 @razhuny @lmoross @minijohn @marilyncarkner @maryo1952 and others have posted in other discussions about Actemra infusions and may have some experience to share with you.

Do you keep a daily log to track your level of pain when you get up in the morning along with that days dose of prednisone?

I'm currently doing Actemra infusions.

It was somewhat difficult for my rheumatologist to get Actemra authorized for me since it isn't FDA approved for PMR. Now I'm told the success I have had with Actemra is so good, there's no plan to stop Actemra anytime soon.

I started with Actemra injections every 2 weeks. Injections every 2 weeks worked well and I tapered off prednisone. Unfortunately I had a bit of relapse after prednisone was stopped. I needed prednisone again for a couple of months. I insisted that Actemra was working so I was switched to weekly Actemra injections instead of every 2 weeks.

I had better luck tapering off prednisone the second time while doing weekly injections of Actemra. Just by chance, a monthly Actemra infusion seemed to work even better than the injections. My rheumatologist said there was no reason why I couldn't do infusions if I wished.

I took prednisone for more than 12 years to treat PMR. My list of medications to treat prednisone related side effects grew in proportion to the years I took prednisone. My only regret is that Actemra wasn't tried sooner instead of 12 years after being diagnosed with PMR.

Your mileage may vary but I have been off prednisone for the majority of the past 3 years. Additionally, I don't seem to need 4 other medications anymore.