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

Posted by ajf1950 @ajf1950, Oct 16 8:44pm

I have been dealing with PMR going on4 months now, how is it diagnosed and what are the treatments

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Profile picture for boomermeg @boomermeg

@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.

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@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.

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Profile picture for lhk2 @lhk2

@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.

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@lhk2
Glad if it helps at all and it's great that your wife has the desire to find all the medical info. It's really important, especially these days!
I hope yours will be mild also, but if mine returns in a flare I pray it's not brutal like it was prior to Prednisone. Worst thing I've ever been through and that's saying a lot. I pray for everyone affected by this bizarre disease. Blessings.

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