PMR moving into other muscles

@miluna I do not drive either because of my arms and can’t really turn my neck and GCA plus I have 2 aneurysms with a stent

And the 3 main nerves feeding that area and down to the hands and fingers is the subacromial nerve bundle. No wonder we get so much shoulder, arm, hand and finger pain......whether it is PMR, steroids or some other musculo skeletal thing like OA, RA, Carpel Tunnel etc. No wonder it is so confusing to try and manage. My physio identified the involvement of another nerve in my PMR shoulder - the axillary nerve which originates from a different place (sort of behind and down from the shoulder). She suggested it had got in on the party because PMR is, inevitably, causing my to hunch a bit and round my shoulders a bit in response to pain (and tiredness). She's suggested chest opening out exercises - lie on a rolled pillow down my spine, angel wing rotations etc. Really seems to be helping.

@pah17 hi, I’ve had PMR since June of 2022. Mine began with a sudden onset headache…like no other headache, more of a searing burning pain, in the crown of my head. I took 2 Tylenol and the next day, it was worse. A few days later, I had full on lower body pain, which moved quickly up my body. It took months to get a full diagnosis, but finally I. Was diagnosed with Occipital Neuralgia and PMR. I was put on Gabapentin, which quickly took my horrible headaches away, and prednisone for the PMR. It took me 5 months to get in to a Neurologist, that specializes in ON…that is still the case, which is ridiculous! Luckily my primary care had put me on the Gabapentin and it worked. PMR and ON, often present together and that’s how mine came on. Since Covid vaccines are being looked at, as a huge spike in auto immune diseases, my Rheumatologist has advised I not get anymore vaccines. I’m 63 and have only had Covid once and it was 2 years after Covid and I’d had 2 doses plus boosters. Everything comes with risk!
My PMR has changed and spread into my Clavicle. It’s rare, but has been documented and a paper was written up about it.
I’m now beginning Kevzara injections, and I have had 2 now. Within a few days of my first injection, my Clavicle pain, which wasn’t an issue, as I had kept it at bay, on my 5mg dose of prednisone…..was now raging! It also flared my ON symptoms shortly after. I read that Kevzara, can make other underlying autoimmune diseases flare. At this point, I haven’t even begun my taper of my steroid, which is why I’m on Kevzara. If this drug is going to trigger this kind of pain, before I even begin to try to taper, then I won’t be continuing it. I have a video chat tomorrow with my Rheumatologist to discuss next steps.
Has anyone had Kevzara cause them to have any issues like this, before you even are near tapering off the steroid?
Thank you in advance!

@lori62yb
OMG - I've had migraines for most of life, but recently (since being diagnosed with PMR), I've been getting sporadic ice pick headaches on one side of my head. It usually goes away within a few minutes thankfully. After reading your story, I'm now wondering if I have ON also.

I have GCA and PMR following a horrible experience with Covid which continues to impact my esophagus. Never been sick and took excellent care of myself which quickly progressed from only swallowing liquids to debilitating headaches with such pain that I was unable to safely navigate stairs. And no it was not migraines. And then PMR with high doses of prednisone.
I wonder where this came from…long COVID, genetics, or just bad luck?

@54pontiac hello! My PMR is in both elbows and at night it can be very painful. I also have it in my clavicle area….

@rebeccaheard I had my ON begin 4 years ago, and within a few days PMR followed ….its very common for the two to come on together . I was tested for GCA, which thankfully I don’t have, but my ON flares a few times a year, and I have Gabapentin, which takes the pain away. I see a Neurologist who specializes in headaches, this is how I was diagnosed.

@lori62yb I've never hear of ON. Going to research it now.