Am I at wrong Prednisone level?

[Greytree]

My legs/calves are tight and I can’t really squat. Must walk very slow and raising my arms makes them hurt. Am I on too low a level of prednisone? (I am at 13.5 after starting at 15 in October 2021. I’ve gotten as low as 12.5. One rheumatologist thinks I have GCA and I had my first dose of Actemra two weeks ago. His nurse says the prednisone Will be reduced after more Actemra infusions - once a month.) But, in the meantime, should I be at a level of Prednisone that makes me feel ok? Thanks for any thoughts.

[PMRpro Ambassador]

My rheumy told me to wait until I felt a difference from the Actemra before reducing - and I was at considerably more to be comfortable. I'm only feeling a significant difference now after 3+ months of injections. So I would make sure I felt decent in the meantime.

[Greytree in reply to PMRpro]

I’m just not sure what “comfortable” is. I get so confused with all this.

[PMRpro Ambassador in reply to Greytree]

Comfortable seems a good way to describe being at a low level of pain that I can live with

[Greytree in reply to PMRpro]

Thanks. I didn’t know I should start feeling better on Actemra. I thought it was the same only without bad effects of Pred. That is good to hear.

[PMRpro Ambassador in reply to Greytree]

Oh no - TCZ doesn't cure the underlying autoimmune cause of the inflammation but it does stop the inflammation developing. It is hoped that if it stops the process for long enough the process will go into remission for a significant length of time. The autoimmune bit remains a possibility so you COULD relapse - therefore not a cure.

[Greytree in reply to PMRpro]

Thanks. I’m just in the shallow mode of being glad to hear that it could make me feel better! (-:

[PMRpro Ambassador in reply to Greytree]

Hardly shallow!!! What we want isn't it?

[Sharitone]

How were you at 14mg? Has your rheumatologist made you feel it would be ok to increase till the Actemra starts to make a difference? Assuming you're not having any particularly awful side effects, in your shoes, I would be very tempted!

[Greytree]

You are lucky to have such a team of doctors. Thanks for the rundown!

[Greytree]

You are making me tempted. Probably a good experiment. Go up to 14 or 15. Thanks.