I had PMR, then GCA, undiagnosed for a year. That was my own fault as I thought it was fibromyalgia and nothing could be done.
My PCP was not curious enough to match my symptoms of pain and stiffness with a slightly elevated sed rate in the earlier stages (after I had it about six months).
A good friend, a doctor, familiar with PMR and GCA, got involved when I got shingles (a mild case, I'd had the SHINGREX vaccine). He told me what tests to ask my PCP to order. My PCP was resistant. My inflammatory markers were off the charts when the test results came in. I was referred to a rheumatologist and immediately scheduled for a temporal artery biopsy.
My mother in law had a mysterious ailment which my same doctor friend diagnosed as GCA back in the 90s, and my maternal aunt had it as well.
I was very familiar with my m-i-l's symptoms, but they were so different from mine, I never for a minute thought I had GCA.
The pain of PMR is unlike any other, on a scale of 12 out of 10. While I wasn't diagnosed I was on jury duty and couldn't press down the faucet in the bathroom to get water to wash my hands. Someone did it for me.
It was difficult to come to terms with having osteoporosis and having to take prednisone, but I knew it was necessary.
I was off prednisone one year, then had a relapse. The symptoms of GCA the second time around were somewhat different from the first time. My reactions to the high dosage of prednisone, 40 mg, was different as well.
GCA has caused me to scale back my activities, and not expect to accomplish a multitude of tasks in one day. Through all this, I've been caregiver to my husband who has Alzheimer's Disease, but so far, that's been easy.
By the way, my mother-in-law lived to be nearly 100 after her diagnosis of GCA when she was in her 80s.
I wish the best to everyone who has this strange, relatively rare disorder.