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Low iron levels and PMR

Polymyalgia Rheumatica (PMR) | Last Active: Aug 6 8:23am | Replies (52)

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Profile picture for boomermeg @boomermeg

@rlstonejr I'm so sorry to hear everything you're currently going through and have gone through since 2014. I'm just learning about PMR itself and how it effects us, but I do know that what I've learned is from my own "searching, researching " by asking one question followed by another to Brave browser "search." Might sound funny, but there's a lot of info. I'm the one who suggested to my PCP NP that I might have PMR after all the research. She'd done a ton of blood tests and found the critically low iron saturation first and within about 2 weeks the CRP and ESR had gone into High. It was then I found PMR. I don't know what you'll learn, but if you want to try, it's worth it if you get any answers. If you search for "If you have PMR and have been on xxMg of Prednisone for xx time, and your Iron saturation is xx, your ESRand CRP are xx, why do I still feel chronically fatigued?" I've no idea what will come up, but try asking questions in different ways, or just one part of the above first, and in the area below the answer there's usually a window to ask a further question, you can ask a further question re the above (your experience). I've gotten different answers at different times and it often is the way I pose the question. If you have the time and are so inclined, it might give you some ideas at the least. I hope you're able to get relief from the chronic fatigue after everything you've been going through with the PMR and Prednisone. Blessings

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Replies to "@rlstonejr I'm so sorry to hear everything you're currently going through and have gone through since..."

@boomermeg thanks for the advice and kind words. Been there, done that often over the last 12 yrs. Took 6 months to get diagnosed even after telling pcp that both parents had PMR and I was certain I did too. Finally demanded referral to Rheumy who agreed. I’m definitely googling hepcidin! It took years to get pred down to 8 mgs; spent 3 yrs at 5mgs; currently at 6. But Rheumy keeps asking me to taper down. Every taper ends in a flare and back up higher just to start over