@glinda47
Thank you! We got his inflammation levels back today (CRP and ESR) and they are both normal!! The CRP is the lowest it's been since he got PMR in May 2023 and GCA in Feb 2024. I feel the Actemra is helping him and pray we can get him off prednisone. He was on 80 mg starting late Feb and has tapered to 70 mg but that is still way too high. We'll get there, slowly but surely. She's having him do labs every two weeks now and will continue with the prednisone taper.

I think you're very wise to have more tests done. And I really hope you don't get GCA. Be your own advocate and do your research! Ask lots of questions and if you really feel you need something like a particular test, fight for it. I've had to fight for everything my husband has gotten. Including his temporal artery biopsy. If I hadn't, his diagnosis would have been TMJ and stress headaches (even though he had PMR with all the GCA symptoms other than vision loss, and even though I told this to his former rheumatologist - former is the key word). She just did not want to believe me that he could have GCA which I thought was absolutely insane. Especially with what was at risk. In the end, after his biopsy, after he was resistant to normal treatment to GCA and ended up hospitalized with 1200 mg infusions of methylprednisolone, she finally admitted his was the worse case of GCA she's ever seen. Yet not a single apology for fighting me every step of the way, making me sound like an idiot when I questioned her. We now are very fortunate to have the chief of rheumatology as his doctor. I've decided I will be filing a formal complaint about what happened since I have everything so well documented. Otherwise, this might happen to someone else. I feel my husband, without proper treatment, could have ended up with a stroke, aneurism, blindness or worse. I was watching him deteriorate before my eyes. So fight for yourself!!!!!