@tsesow

How did your endocrinologist test/monitor your cortisol?
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I was referred to an endocrinologist when I struggled to taper off Prednisone. My pain wasn't always consistent with PMR so it was "suspected" that there might be something else. I was still on 15 mg of Prednisone when I was first referred to an endocrinologist.

The endocrinologist said there was nothing she could do if I still needed so much Prednisone for PMR. She referred me back to my rheumatologist asking if anything else could be used to control PMR. She said to come back when I could maintain a dose of 3 mg or less.

A year or so later, my rheumatologist came up with the idea to try Actemra. He said the research showed good results with GCA so it should work with PMR too. This was back in late 2018 so this research was new.

I started Actemra on January 1st, 2019 thinking it was an appropriate day for another attempt to taper off Prednisone. I had given up and bought into the idea of taking Prednisone for the rest of my life. My rheumatologist simply said I was too young (64) to take Prednisone for the rest of my life.

Surprisingly, Actemra allowed me to quickly taper down to 3 mg without a flare. I wasn't feeling well but I didn't have any pain that I attributed to PMR. I reminded my PCP about the endocrinologist wanting to see me again when I reached 3 mg. My PCP was the one who did a random cortisol level and informed me it was too low.

My rheumatologist called me later and said I should NOT taper my Prednisone dose any lower than 3 mg until I was seen by the endocrinologist again. I was content to stay on 3 mg but not for months to be seen by the endocrinologist. When I saw the endocrinologist, she "expected" a low cortisol level was part of my problem simply because I was on prednisone for 12 years.

The endocrinologist didn't do much but she checked my 8 a.m. cortisol and ACTH levels. My cortisol level was still low but my ACTH level was normal. A normal ACTH level combined with a low cortisol level strongly suggested secondary adrenal insufficiency from long term Prednisone use.

The endocrinologist wanted me to stay on 3 mg "if I could" until my follow-up visit. She didn't know when my cortisol level would improve. She said if I needed to increase my Prednisone dose that I should call her first to be evaluated. I was given a return appointment 6 months later.

Another a.m cortisol level was done 6 months later and the endocrinologist said it was "adequate." She didn't know if my cortisol level would be adequate when prednisone was stopped. She thought it would be safe to stop prednisone with the understanding that I should restart Prednisone again "for any reason if I felt the need."

I didn't have an adrenal crisis but I had a need for 60 mg again the first time I stopped Prednisone. I didn't have a PMR flare either. Something that had been dormant when I was on Prednisone for 12 years flared up unexpectedly. The nice thing was, I was able to go from 60 mg to zero again in just a few weeks. Some "adjustments" were made and the second time I stopped Prednisone was a success. Before tapering off Prednisone the second time my a.m cortisol level was rechecked and it was still called adequate by my endocrinologist.
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Many things happened over the course of two years until we got my Actemra dose adjusted to control multiple problems. I have "systemic inflammation" so PMR wasn't the only problem. My rheumatologist said it would be impossible to treat everything adequately but he said I could choose between one of two different biologic medications but not both. The other option was that I could stay on Prednisone.

It was purely my decision to be on Actemra with the understanding that I might need Prednisone again in the future. That hasn't been the case and I have been off Prednisone for 5 years.
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"How do you tell that PMR is still active?"

My rheumatologist says PMR isn't gone but it isn't active as long as I remain on Actemra. I have been on Actemra for 7 years total with only a couple of "interruptions." Bad things happen when Actemra gets interrupted so as long as Actemra works for me, my rheumatologist wants me to stay on Actemra.

All I know is that Actemra made it simpler to get off Prednisone. After I got off Prednisone it was easier to sort things out. I still have some problems but now I know everything wasn't being caused by PMR. Prednisone wasn't the best solution for everything either. My rheumatologist believes that long term Prednisone creates additional problems but it works well in the short term to quickly relieve pain.