Can PMR present in the clavicle too?

I’m a 62 year old female, who was diagnosed in summer of 2020 with PMR. About two weeks before the PMR symptoms happened, I had a sudden onset thunder clap headache come out of nowhere, while brushing my teeth. It didn’t feel like a normal headache, but like my scalp was on fire! I would later be diagnosed with Occipital Neuralgia.
Then I had barely gotten my ON symptoms under control, when I began having pain in my quads, hamstrings and upper body. I went to see a Rheumatologist, who diagnosed it as PMR in September of 2020. I’ve been treated with prednisone and have been through numerous tapers…without success. I was put on Methotrexate with my prednisone and began to taper again and once I dropped below 5 mg of prednisone, it all came back. I was on the Methotrexate for 6 months.
I’ve since tried three more times to get off the steroids and no go! My Rheumatologist recommended Kevzara last Spring as another option, as an assist to taper off. I asked her if I could try on my own one more time, before trying Kevzara, as I wasn’t too thrilled with the possible side effects. During a 8 month very slow taper, I was able to get down to 3 mg without significant pain. I felt I could deal with the discomfort, that was presenting with the taper. But once I dropped below 3mg, I began having clavicle soreness on my right side, which quickly became very sore and eventually moved to the left side as well. It felt like a burning pain at times and made my chest wall below the clavicle, very tender. I was unable to get my shirts on without terrible discomfort and laying on either side was uncomfortable. After enduring 3 months of this, I let my doctor know..I was upping my steroids to 10mg. It took 5 days and finally the pain was nearly gone!
I saw my Rheumatologist last week and she said it couldn’t be PMR, that it just doesn’t present that way and she had never had a patient say they had it there. She mentioned I could try Kevzara, but also said that it wasn’t shown to work on patients with no inflammatory markers…which I’ve never had. I decided it wasn’t worth all the side effects, if it wasn’t shown to even be effective in people without inflammatory markers.
She ordered X-rays last week on my clavicle area and my groin, which are two areas that I’ve had some of my worst pain. When it’s really bad, my legs hurt a lot as well.
Since the X-rays all came back very normal, she is still pushing Kevzara…now for 3-6 months. I’ve been in other forums and a couple people with PMR, have had it present in their clavicle area…but she’s not hearing me. I’m just frustrated and ready to be well. I’m very active and workout a lot. I have never lessened my workouts, even when it makes me more sore at times. It’s my mental savior, with this horrible disease! When I increased to 10mg, the clavicle pain nearly was gone. Now it’s creeping back in and I’m still on the same 10mg dose of prednisone. My Rheumatologist says I’ve been on steroids too long and now I’m worried she’ll cut me off, if I don’t try Kevzara.
Thank you for your support!
Lori