← Return to Are others with GCA and PMR on Tyenne Monthly Infusions?

Discussion
Comment receiving replies
Profile picture for jabrown0407 @jabrown0407

@jck51 Please understand that members of Mayo Clinic Connect are not medically trained so we often don't really understand whys. We are all patients of a Dx that is confounding even to the doctors treating us. PMR/GCA/vasculitis are all uncommon to rare medical problems with limited knowledge professionals available to treat us.
I can not get a consistent answer when I ask just two rheumatologist. I have a treating doctor where I live and I have a 2nd opinion Rheumy who works with a different teaching hospital in a different state. Some days I'm not sure they would agree on sunrise in the East vs. West.
As far your question on Inflammation markers while on an IL-6 biologic. I asked my AI tool and it dumbed it down so I could understand. They are indeed not reliable when on Actemra/Tyenne. Possibly you use an AI tool and can query it. I have learned to change the question I ask if my tool doesn't answer my question on the first try. You can also try doing a simple internet Search -ask Dr Google.

Jump to this post


Replies to "@jck51 Please understand that members of Mayo Clinic Connect are not medically trained so we often..."

@jabrown0407

You are absolutely correct about doctors not being able to agree. When I was diagnosed with PMR, there were 3 rheumatologists trying to diagnose me. The rheumatologist who felt the strongest that I had PMR became my rheumatologist for the next 15 years. The only question I asked at the time was, “What is PMR???”

There was a similar controversy when I was offered a biologic. There were 2 different biologics that I ended up trying. I had mixed results from both so it wasn’t a clear choice which one I would stay on. Then one of the doctors asked me which one worked the best for me… my choice was Actemra.

I have no regrets about my decision because I have now been off prednisone for more than 5 years.

I also had a great rheumatologist for many years simply because she didn’t pretend to know everything.

@jabrown0407

I know that, but thanks for explaining.