@ceedub I too would like to know this. I have GCA and am on Actemera and my labs look good but I still have symptoms. Pressure headache and ears hurt inside. I’m tapering prednisone and am on 9 mg. Tapering 1 mg every 3 weeks until I hit 7. I stopped the methotrexate after the 3rd infusion.

@ceedub

I think ESR and CRP might be “less reliable” on Actemra but inflammation markers are never completely reliable.

My rheumatologist routinely checks my inflammation markers while I do monthly infusions or Actemra. Once we extended the time between infusions. At seven weeks between infusions my ESR and CRP showed an increase but I denied any change in my symptoms. My rheumatologist relied more on the increase in my inflammation markers than my symptoms. It was decided that I should not go longer than six weeks between infusions.

I think inflammation markers while on Actemra might be more useful if Actemra wasn’t working for some reason. In my example the increase in my inflammation markers was attributed to too long of a time between infusions.

@ceedub If you have an AI tool, you might ask it the question about reliability while on prednisone and GCA symptoms. I believe that both doctors could be correct because one is looking solely at potential eye damage and the other is looking much more holistically at overall symptoms returning. Just because doctors don't agree does not make one right and the other view point wrong.
I have had totally asymptomatic GCA for several years that went undiagnosed and has done vascular damage, not eye damage because I have never had a cranial symptom. Plus my eye doctor examined me annually and looked for signs of GCA. It was silently doing damage elsewhere.
I am telling you this mainly so you realize that there are patients outside the fat area of the bell curve and from time to time it could be you. Doctors look mainly at the fat area because that's where most of us are most of the time.