@tuckerp

I definitely got the feeling that Dadcue is the king of prednisone and PMR. He did say he's still on Actemra. From what my husband's rheumatologist told us, he will use Actemra to help taper the prednisone and then will likely be on Actemra for another two years to complete the treatment for giant cell arteritis. I wonder if Dadcue could have had some form of GCA given how long he needed prednisone. However, I don't know enough to know if others have been on prednisone that long for just PMR. I say just PMR but I do not minimize how awful it is. I saw my husband suffer through that before GCA and it was horrible. I don't wish either of these on anyone and as much as we hate prednisone for all of its nasty side effects, we also remember that it saved him more than once and still is. Sometimes you do have to weigh the benefits with the risks and when the benefits outweigh the risk, you go with it regardless what the side effects are (especially when there appear to be no other options for PMR or GCA.)

I'm not an expert in anything. The thing I learned from the whole ordeal was how much I didn't know about medical disorders and medications. PMR is still an aberration among medical disorders when every research paper on the subject says more research is needed.

I didn't have any of the usual PMR related illnesses and I was never diagnosed with GCA. I was an aberration in that respect given I was diagnosed with PMR more than 15 years ago. Prior to PMR my diagnosis was a type of inflammatory arthritis called reactive arthritis. My very first dose of Prednisone was over 30 years ago for uveitis which was related to reactive arthritis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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I don't know how I wasn't ever diagnosed with GCA. I had uveitis that caused every kind of visual disturbance imaginable not too mention the possibility of going blind. I had flares of uveitis at least 50 times and needed at least 60 mg of Prednisone every time.

Whenever my inflammation levels were too high I had the mother of all headaches mostly around my left eye. Those electrical headaches were diagnosed as trigeminal neuralgia. It was a vascular problem combined with a nerve problem. The neurosurgeon said a large vein was traversing through my trigeminal nerve. He said the surgery was complicated and involved a branch of the petrosal vein. He said the vein couldn't be sacrificed for fear of me having a stroke. Separating the vein from my trigeminal nerve was impossible but he did the best he could. So far the microvascular decompression (MVD) surgery has stopped the trigeminal neuralgia pain.
https://radiopaedia.org/articles/superior-petrosal-vein-2?lang=us
I took a lot of Prednisone for trigeminal neuralgia in a futile attempt to quiet it down. Ultimately trigeminal neuralgia became refractory because the electrical headaches wouldn't stop for hours sometimes. My neurosurgeon said Prednisone was probably helping the inflammation and swelling in the area.
https://www.sciencedirect.com/science/article/abs/pii/S1878875022012918
I do know a fair amount about the adverse effects of Prednisone. I learned that from all the patients I cared for as a nurse. I knew very little about adrenal insufficiency until I stumbled upon the person who had an adrenal crisis. She was truly an expert in my opinion.

My rheumatologist has no plan to stop Actemra as long as it continues to work and Actemra keeps me off Prednisone.