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@jeff97

Were you started on Actemra relatively soon after you were diagnosed with GCA?

I was on prednisone for 12 years before Actemra was tried and then another year or so until I was able to taper off prednisone. It wasn't so bad being on prednisone other than how it changed my heart rate, blood pressure, metabolism, sleep cycle, mood and so many other things. I didn't know that prednisone replaced cortisol which was a major regulatory hormone.
https://my.clevelandclinic.org/health/articles/22187-cortisol
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It was impossible to take the right amount of prednisone when the situation warranted more or less prednisone. There was no way I was ever going to regulate my prednisone dose the way the HPA axis regulates cortisol. I did the best that I could but 12 years on prednisone was way too long.
https://my.clevelandclinic.org/health/body/hypothalamic-pituitary-adrenal-hpa-axis
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I still do a monthly Actemra infusion. I am now five years into my post prednisone recovery and I still see an endocrinologist for hormone imbalances and metabolic abnormalites. My cardiovascular system has normalized so I don't need blood pressure medications anymore. I think my post prednisone recovery is slower because PMR lasted a long time and needed prednisone for more than 12 years until I finally tapered off. I have learned more about prednisone after I tapered off than during the 12 years when I was taking it. My endocrinologist has explained many things to me.

Maybe it is just because I have aged naturally instead of feeling like I suddenly aged when PMR was first diagnosed. At least Actemra doesn't suppress my adrenal function like prednisone did.

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Replies to "@jeff97 Were you started on Actemra relatively soon after you were diagnosed with GCA? I was..."

@dadcue My rheumatologist wanted me to start Actemra as soon as I was diagnosed, but it took 6 weeks to get it approved by my insurance and get it started at the specialty pharmacy.

I didn't have any adrenal issues while I was tapering prednisone, so I didn't expect any problems after I stopped. But looking back on it, I realize it probably took 6 months for my adrenal function to get back to full strength. I think not being able to exercise hard was an indicator of adrenal insufficiency. It like pressing hard on the gas pedal of your car and nothing happens.