GCA taper

[LRevell]

I’m currently on Actemra injection once a week after 1 1/2 years. I haven’t had any flares and my assistance will run out. I would like to get off of it entirely if possible.

has any one had a experience of getting off it and staying off?

[PMRpro Ambassador]

Are you only on Actemra? Are you also on some pred?

You will only be able to get off Actemra entirely if the underlying autoimmune cause of the inflammation has burned out. If you are still on some pred, you may need more pred. But you can only find out by stopping the Actemra and waiting and seeing what happens.

In the clinical trials some patients were able to stop Actemra having also stopped pred and remained in remission for some considerable time but there is no fixed expectation of how long it will be. Some relapsed sooner than others.

[LRevell in reply to PMRpro]

Yes, I’m on Actemra only no Prednisone. I know that this disease will never go away completely but the Actemra is making me woozy in the head. Been having a problem falling asleep lately and in general feeling weird. Will be seeing my Rheumatologist in a week. I was just wondering if anyone had any issues getting off it or how it’s affecting them. Thank you for your reply!

[SheffieldJane]

I stopped Actemra after approximately one year. I had abdominal pain and was eventually diagnosed with Diverticula Disease. I came off Actemra without tapering and experienced no ill effects. I am currently stuck on 4.5 mgs of Pred. Actemra helped me to get down from 40 mgs to 10 mgs. It has taken me a long time to get down to my current dose.