I'm so sorry you've had to go through this too. That's funny about people asking how much you're on. LOL My husband's metabolism is on over-drive. He's jittery which has to be so annoying. I see his hands shaking and want to cry. It comes on about an hour after taking prednisone and lasts for hours, until his evening dose. The evening one isn't as bad. Then again he takes a lower dose in the evening. 40/30 mg now.

Wow!! A year even with Actemra? That's brutal! The one good thing is he has no pain. And that is worth a lot after having seen what he went through. I honestly thought he might not make it through this on his darkest days. It was a very wise ER doctor that got things moving in the right direction. Had we listened to his rhumatologist I have no idea what would have happened. Suffice it to say we've found a new one we're very happy with. We lucked out and got the chief of rhumatology (after she found out what we went through.) He has a really bad case of GCA that was very resistant to treatment. It took IV infusions and splitting his daily dose of prednisone to get him on track.

Are you still on Actemra? Our new rhumatologist commented last week that he could be on it for the rest of his life???