Prednisone and bone loss. I was diagnosed with PMR

I will update my story. Thanks so much to all who responded previously.
In summary, diagnosed with PMR in July 2022, put on prednisone 20 mg daily. Great results for a short time but my fall had excruciating pain in my right hip. In February I had a total hip replacement with excellent results. Got my prednisone dose down to 5 mg.
A couple of months after my right hip replacement I developed severe pain in my left hip and investigation revealed destruction…..so in Aug I had that hip replaced. Had some complications but home now and doing great. NO pain anywhere. My orthopaedic surgeon says PMR over diagnosed…..hmmmm. Anyway fingers crossed that I will continue to feel this good. The past 1 1/2 years have been very challenging and I feel so bad for all of you on this journey. Best of,luck.

I wonder about misdiagnosis too, but I can’t explain the terrible pain that was so debilitating for so long. My joints have some arthritis, but not enough to cause such pain. Methylprednisolone worked for me in two days. The pain is under control, but try spine issues are much worse. MRI next week.

After 2-1/2 years on steroids, my latest bone scan showed a significant drop. My PCP ordered an "endocrinology chart review" to see what they recommend. I'm not happy about the bone loss, but I am happy to get an endocrinologist involved because I'm down to 2.5 mg of steroids and I'm curious what my cortisol level. I had asked my rheumy to be referred to one but she said it wasn't necessary.
But what happens next is mysterious (to me). I have a VIDEO appt with the endocrinologist in early March. Don't they need to do some tests before I would have a video appt? How are cortisol levels measured? Anything I should ask in the meantime??
Thanks wise ones.

Hi @pdxmac,

I combined your discussion with an existing discussion titled:

"Prednisone and bone loss. I was diagnosed with PMR"
- https://connect.mayoclinic.org/discussion/prednisone-and-bone-loss-i-was-diagnosed-with-pmr/

@JustinMcClanahan

@JustinMcClanahan
Thank you for sending me this thread, I did find some useful information. Sadly, it does not cover the main point of my question which has to do with the endocrinologist. I'm hoping someone can shed light on that part.

@pdxmac
The endocrinologist may want to discuss your situation with you first in order to know what specific tests are needed. That could be done through a video visit but of course you would need to go to a lab for testing.

I had an infusion of Reclast two months ago. It was a studied choice as far as a novice (me) with help from Doctors and boards like this can probably make. I have severe osteoporosis. I am tapering down on Prednisone, but I am still on it (7.5 one day, 5 the next). Prednisone is of course know to cause bone loss. Not my favorite position to be in, but I get the layout on the land on this. On the plus side, my RA said two years on Reclast (one infusion per year) should be enough to protect my bones. All the best in your decision.

@pdxmac

In conjunction with PMR and chronic prednisone use the following link discusses what endocrinologists recommend.
https://pmc.ncbi.nlm.nih.gov/articles/PMC12378006/
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I like how Australia summarizes things for us. I like their conclusions because sometimes a slow taper isn't enough. According to my endocrinologist, sometimes a taper wasn't even necessary after my cortisol level was adequate again AND my underlying inflammatory disease was controlled. This wasn't something that I could decide or non-medical people on the internet to decide.

"The management of stopping glucocorticoids, either abruptly or by tapering, requires a nuanced approach to prevent adrenal insufficiency and withdrawal symptoms, while ensuring adequate control of the underlying disease. Cortisol testing for HPA axis function may be required in some cases following prolonged glucocorticoid therapy. Recognising and managing withdrawal syndrome and providing appropriate stress dosing are critical components of care. Patient education is vital to enhance safety, confidence and appropriate clinical outcomes."
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For me --- an a.m. cortisol level appropriately done by my primary care doctor earned me a referral to an endocrinologist. My primary care doctor had the check to see how an a.m cortisol level needed to be done.

Another part was I needed to be symptomatic of adrenal insufficiency. I already had the history of long term prednisone use so that was a given and adrenal insufficiency was "expected" by my endocrinologist.

@tyl411 I have now been off of Prednisone for 2 years (on Kevzara now) but also needed Reclast. I had my first infusion over a year ago and 2nd a few months ago. My doctor said she will order another bone density next year. Fingers crossed for all of us!