Testing for Cortisol levels during taper of prednisone

@irene6754

It is a very long story!

Yes ... I eventually managed to get off Prednisone. My second visit with an endocrinologist was amazing. We had a long discussion about my cortisol level and what "might happen" if I stopped prednisone. I was on 3 mg of prednisone for about 6 months after being told not to taper any lower than 3 mg.

Actemra allowed me to taper down to 3 mg. During 12 years on prednisone without Actemra -- I was lucky to get under 10 mg. Actemra didn't suppress my adrenal function. My endocrinologist thought 3 mg of prednisone was a low enough dose to allow some recovery of my adrenal function but she wasn't overly optimistic.

I had a morning cortisol level drawn when I initially reached 3 mg. That was when my cortisol level was too low so I was told to stay on 3 mg. After 6 months, a second morning cortisol level and ACTH level was drawn. The results of those labs were "encouraging" according to the endocrinologist.

After 12 years on Prednisone at doses greater than 10 mg, my endocrinologist was surprised that I had a "measurable" cortisol level let alone a level that was "adequate." Having any "measurable" cortisol level after such a long time on prednisone suggested that my adrenal glands did not completely shut down, which is a positive finding.

My endocrinologist said it "might be safe" to discontinue prednisone if I was willing. It wasn't exactly like I was told to discontinue prednisone because it depended on how I felt. I had symptoms of adrenal insufficiency which for me was mostly "overwhelming fatigue." I also had some body aches and pains but nothing that seemed like PMR. I was "reasonably certain" that Actemra controlled PMR at the time.

My first attempt to discontinue Prednisone was a "leap of faith" because my endocrinologist would not predict what would happen. She only said I could restart prednisone for "any reason if I felt the need." I didn't have an adrenal crisis but within 2 weeks of stopping Prednisone the first time --- I needed 60 mg of prednisone again.

Things really got interesting and complicated after I went back on 60 mg of Prednisone. Adjustments were made and other treatments were tried. About 6 months later, I was cleared for a second attempt to discontinue prednisone. It was a collaborative effort by my rheumatologist, my ophthalmologist and my endocrinologist that made my second attempt to discontinue prednisone successful.

I have ongoing follow-up visits with an endocrinologist but my cortisol level is not a problem anymore. I have been off prednisone for more than 5 years. I now do monthly Actemra infusions but initially I was doing Actemra injections.

@dadcue Do you think there is ever a chance you can stop the Actemra? Probably a scary thought stirring up a hornets nest.

@tuckerp

I doubt it ... unless I push harder to come off Actemra. I have mentioned stopping Actemra to my rheumatologist a couple of times. My rheumatologist gets this puzzled look on his face and asks me why? I don't really want to stop Actemra so we agree to discuss it later.

I might have a compelling reason to stop Actemra. It isn't an official diagnosis yet. My prostate is large. I also have kidney stones in both kidneys that are monitored on an annual basis with a routine CT-scan. The CT-scan shows my adrenals and all of my internal organs.

The CT-scan from last year showed something suspicious that needed some investigation. The suspicious thing wasn't too concerning until some labs were drawn. The labs don't confirm anything but a Dotatate scan was ordered.

A Dotatate scan is a whole body scan so there might be a lot to look at. The results might explain why so many of my hormone levels are abnormal. I have seen an endocrinologist since I tapered off prednisone. I'm learning a lot about hormones.

I'm getting ready to do a cruise to Europe. The suspicious thing grows very slowly . The Dotatate scan will be done in early April when I return.