Hello @norieaugustine, Welcome to Connect. I have PMR which is currently in remission but when it was active my primary care doctor along with my rheumatologist would frequently ask me if I had any pain in my scalp or temple areas which can be an indication of giant cell arteritis (GCA). I also lived with some pain as I was tapering off of prednisone for both occurrences I had with PMR. My rheumatologist had me keep a daily pain log along with the prednisone dosage I was taking for that day which was helpful when I was tapering off of prednisone. Here's some information on GCA that might explain it a little better.

Giant Cell Arteritis - Fast Facts: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Giant-Cell-Arteritis

You also may want to read through the posts in these discussion to see what other members have shared:
-- PMR initial diagnosis: Can there be an underlying disease?: https://connect.mayoclinic.org/discussion/pmr-initial-diagnosis-1/
-- GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica): https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/

Can you share a little more about your PMR diagnosis and how long you have been on prednisone?

Thanks, very helpful

Hi Jean Anne @jabrown0407, Thank you for the private message. I thought I would respond to your message in this discussion - PMR connection to GCA so that other members who may have information or similar experiences can share them with you. In answer to your question, I don't remember running across any NIH or other article on headaches associated with PMR when you have not also been diagnosed with GCA. Here are a few articles I did find on PMR and GCA that mention headaches and diagnosing PMR and GCA.

-- All headaches are not GCA : https://academic.oup.com/rheumap/article/3/Supplement_1/rkz028.005/5572736
-- Diagnostic accuracy of vascular ultrasound in patients with suspected giant cell arteritis (EUREKA): a prospective, multicentre, non-interventional, cohort study: https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(21)00246-0/fulltext
-- Widespread headache as the first clinical manifestation of giant cell arteritis in patients affected by polymyalgia rheumatica: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5149570/

Thank you, John, so much for the links on GCA and headaches. I hope they will help me sort some things out.

@tsc, @jabrown0407 . Great advice, Teri, to get right to Emergency if eye issues present! I permanently lost most of the vision in my right eye when GCA was 'suspected' in March 2019 but not treated until emergency hospital admission in June 2019, when that vision loss suddenly happened at home one morning.

@tsc. No, Teri. Even though I had been to Emergency five times because of right temporal and scalp pain, GCA wasn't on the doctors' radars until I suddenly loss most of my right eye vision. THEN I was hurried off to hospital Admitting on an emergency basis, direct from a specialist's office! It happened to be my birthday and the doctor wouldn't even allow my friend and I to stop for a burger on the way! I was put on 1000 mg Prednisone by I.V. for 3 days to save my "good" eye from blindness.

You are so right, @tillysam. I have a tendency to minimize my symptoms whenever I can. I am fortunate that it did not have disastrous consequences for my vision.

What I have learned is that we have to be on top of things so that nothing disastrous happens. Not sure of something, call your doctor. Do not put things off.

Hello everyone. I’m so happy to have found this place. I have had symptoms of PMR and GCA for months now. Been to 2 rheumatoid drs and no diagnosis. If fact, my long time rheumatoid dr left and the new guy took me off my meds without even seeing me or a phone call 😡
I feel like I’m dying. I told this to my last Dr at my evaluation. My blood results came back showing nothing and I was referred to pain management 😳🙄 ( august 24th)
I don’t know what to do or where to go. The headaches and pressure in my neck…and the back and arm pain are bad.
Will pain management be able to diagnose me? And treat me? I’m so frustrated 😤

My concern too. I already have an eye problem, and 13 years ago I developed a rare voice condition where I cannot talk, just whisper. It's what RFK Jr has, laryngeal dystonia. So if I lose my vison too, not being good at typing, I will not be able to communicate with our 5 kids and 15 grands!
SO tapering causes pain and I am not ready for more than 1mg/month taper.