@redboat Have you ever been diagnosed with anything more specific or is it still "presumptive" PMR and/or GCA and/or something else?

Have you encountered any problems with adrenal suppression because of being on prednisone? I had to remain on 3 mg of prednisone for an extended period of time. It was difficult to maintain that 3 mg dose but it allowed time for my adrenals to start producing more cortisol. I had to get past adrenal insufficiency before I could taper off prednisone. Getting off prednisone was a true miracle.

After I got off prednisone while still doing Actemra injections, I had a massive flare-up of uveitis. I needed 60 mg of prednisone again. My ophthalmologist said Actemra wasn't optimal treatment for uveitis and switched me to Humira which is a TNF inhibitor.

Uveitis quieted down quickly on Humira but when I tapered back down to 15 mg of prednisone, the pain throughout my entire body returned. We were calling this pain PMR but my rheumatologist also said I had a "full range of rheumatology problems."

I was given the option of either Actemra or Humira but I couldn't take both. Another option was a "shot gun approach" with prednisone aimed at multiple autoimmune problems.

I didn't like the idea of taking prednisone again and especially not on a long term basis. I chose Actemra with the understanding that I could always take prednisone again on a short term basis if I ever needed it.

I no longer think having a single diagnosis is that important. I believe targeting the cause of the chronic inflammation is more important. In my case, inhibiting IL-6 seems to do the most good.

Prednisone doesn't have to be long term. It can be used short term and intermittently which was what I did for 20 years before PMR was diagnosed. I had several "supplemental" steroid knee injections during this period of time too.

I didn't have the additional problems caused by long term prednisone use when I used prednisone sparingly and short term. Liberal use of prednisone and long term wasn't good.