How were you diagnosed with PMR ? How are you currently managing?

@lhk2
Sorry to hear you're dealing with PMR too, but you're in the right place.
If you'd like to, you can always ask for a copy of any test results, blood work or any other tests. Personally, I prefer to learn for myself everything any test results show. If you use a lab like Labcorp, for instance, you can sign up for an account on their website and then you can view and print out any of your Labcorp test results. You can also ask your Dr's office for a copy of all your lab results, etc. Then you can do a search online about every blood test (put in the test name, ie: CRP, ESR, RA, ANA, CBC, Iron saturation, Ferritin, Hepcedin, etc, etc. I'm a newbie too (7/31/26) but it was my learning about all the different blood tests and then putting in my results along with my symptoms that gave me the PMR results I took to my PCP NP. Went to Rheumatologist within 2 days (they got me in on cancellation list- I had called and asked if they could put me on). She examined me, asked questions, and my blood test results, and she confirmed PMR, then next day she got me an appt for a Color Doppler Ultrasound of my shoulders and to check for GCA (Giant Cell Arterits), which people who have PMR can often have already or can develop so it's good for anyone new to be aware of. My Iron Saturation was at 9% and my Ferritin was high, along with high CRP and ESR, but RA and all other types of autoimmune were negative. If there's high inflammation our bodies produce Hepcedin, which blocks our available stored Iron, which makes our Ferritin go up. So with Ferritin high, you know there's stored Iron, but your body can't access it due to the Hepcedin (due to the inflammation). When you start Prednisone the inflammation will go down and the Hepcedin will go down and your iron saturation will go up. There's a lot to learn and because there's so many Dr's who don't know a lot about it, I want to learn everything I can. Also, it's just an old habit my former PCP taught me about 30 yrs ago. Be an informed patient, be a proactive patient and you'll have a much better life. Dr's today just don't have much time with each patient. I hope you find all the help you need and that we can help you too. Blessings.

@boomermeg: Thanks for your detailed message! I get all my test results through my Dr.'s portal but other than the inflamation markers I am ignorant of all the other tests so your post is really helpful. Sorry that you also have had a recent diagnosis but being your own advocate with your doc and the medical system is very important. I am lucky to have a wife that has done a lot of medical research so I have someone that can drill down pretty deep since she has access to medical journals etc.
Thanks again for your help and I hope that your PMR is mild and that you will be in remission soon.

My story is that I’m 58 and very active all my life, playing tennis, road cycling and hiking and felt great until in July I began to get the awful heavy arm stiffness which spread across shoulders and then down to hips and hamstrings and I felt like I had suddenly skipped 15 years and become old. Luckily I got to see a rheumatologist who was experienced with PMR and quickly got diagnosed after a week on 20mg of Pred. Fast forward two months and now I’m on 10mg and feeling more or less my normal self apart from some anxiety and foggy brain feeling sometimes. Physically I’m continuing my usual activities with perhaps some small tweaks. I’m also eating better and cut down on alcohol.. I’m hoping to start tapering down to 9mg in the next week or so (although rheumatologist doesn’t know that as he wanted me on 10mg until Christmas!) I think we know our own bodies better than anyone and I’m prepared to experiment a little with dosing of Pred and try to find a lower level that keeps the dreaded PMR demons at bay. Then of course the adrenal issues can be another hurdle when you get lower on Pred but I’ll sorry about that when I get there . So yeah to answer the initial question, it seems like Pred is the accepted treatment, certainly initially. I hate taking the stuff but it’s either that or trying to fight PMR pain on a daily basis until it decides to go away. I think staying positive and staying active are really important, especially if you have always been used to being active.. good luck 🤞

@martyn Ha. This is similar to my story in that I’m 58 and have ALWAYS been super active. I was running (and winning my age group) 10k’s and boom! In July I woke up feeling like I had done the most massive workout ever. It started in sit bones, then hips, hamstrings, quads…fast forward 3-4 weeks and stiff neck. Just about 2-3 weeks ago my shoulders and upper arms started hurting.

My PT suggested in September it may be PMR. I’m still waiting to get a diagnosis however. I had to have two surgeries within 3 weeks this fall. I’m coming to the end of my recovery so hopefully next week I can do the blood work. I see my pcp tomorrow.

I cannot take prednisone because I have osteoporosis and osteopenia.

Currently I’m not taking anything. But when I do take a couple of Motrin it brings the pain down. It’s always there though.

And I agree with everyone: I feel like I’ve aged 30 years. My partner is 74 and he moves better than I do at this point. 🙁