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Low iron levels and PMR

Polymyalgia Rheumatica (PMR) | Last Active: 6 hours ago | Replies (47)

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Profile picture for rlstonejr @rlstonejr

THANK YOU @boomermeg
I’ve struggled with this for years. Normal iron, low iron saturation and very high ferritin. Tried supplements-no improvement. Had several infusions which improved saturation but caused ferritin to approach 2000. Tried phlebotomy but no improvement. Finally Hematologist said “maybe caused by PMR inflammation, let’s sit tight and see what happens”. Rheumy on the other hand said she pays no attention to iron tests and since esr and crp are normal maybe I don’t have PMR at all. (Diagnosed in 2014 and on pred ever since - and always normal esr/crp). Your Hepcidin explanation makes total sense for once. Just wish I knew what to do about it. I’m sure my chronic fatigue is due to low iron saturation.

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Replies to "THANK YOU @boomermeg I’ve struggled with this for years. Normal iron, low iron saturation and very..."

@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