Adjusting to life with temporal arteritis

@liz26 The process is slow because the inflammation needs to be controlled. Some people struggle with this process and even relapse while tapering from prednisone. Your rheumatologist helps with the management of this through routine blood tests and monitoring your tapering. You may want to talk to your rheumatologist about adding a steroid sparing drug. Yes, they are expensive but are covered by some insurance programs. While all drugs have side effects, I was eager to wean myself off prednisone asap so introducing the Rinvoq early made sense to me. Sleep management is much worse when you are on high doses of prednisone. Your sleep will improve as you taper to lower doses.

7 plus years diagnosed GCA via biopsies on both temporal region. I am not a believer of being diagnosed with GCA without biopsies as there are so many other issues that could exhibit same. I was not exhibiting “text book” symptoms. Although it was rough until diagnosed, infused monthly (x 5 yrs) Actemra was the best treatment for me. My insurance (Medicare + Capital Blue Cross) covered all infusions. No other drugs accompanied the infusions ie, Prednisone, or the other drugs mentioned in the various blogs. I am in remission (2 years) and getting routine blood work follow-up. Going off Actemra did not present any adverse reaction for me although it was tapered.

That's great to hear. I've been taking Actemra infusions for several months now and am attempting to taper off Prednisone completely. When I get down to 6mg, I begin having headaches again. My rheumatologist believes my GCA is gone since my inflammatory markers are normal. But it feels like it's still there to me, just being masked by the Prednisone.