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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 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

@rlstonejr maybe you need a new rheumatologist. If you have PMR and take Prednisone, your ESR and CRP will go down. That’s caused by the Prednisone. You’re taking the Prdenisone because it’s what quickly stops PMR pain. It is doing its job, it’s lowering ESR and CRP levels. If you stop taking Prednisone, your ESR and CPR should go high with increased inflamation. Not a pleasant experience for you but your rheumatologist will get an education at your expense.
Every PMR patient should look their rheumatologist in the eye during a visit and ask him or her this question(s):
“How many PMR cases do you have and/or are now treating?”
“How many PMR patients of yours are now in total remission or appear to be cured?”
“How many GCA patients do you, or have you had?”
“How many of them are now doing well without medication(s)?”
If their answers are not in double-digits, get a second opinion; or, make a conscious decision to remain their guinea pig sitting on a shelf, out of sight until your next appointment.
In the meantime, research this website and others, learn and write down all you can so you are extreemly informed when you next “present” to doctor or medical professional.
I went in to this (PMR) blindly and suffered consequences. I self educated to the level that my PCP of thirty years tells me that he’s impressed and that this disease triggers patients to become knowledgeable about PMR and GCA. He lets me make the decisions and guides me with his knowledge. I seem to be educating my rheumatologist with sound medical advice coming from my PCP and me. She’s got the best of intentions but limited experience with PMR and GCA patients. She understands where I’m coming from and is consenting to what works for me. And, (knock-on-wood) I’m feeling great and better every day, as well or better than is expected. I’m living a very disciplined life to be this way though. I did what I’ve learned is best, I want to be past this experience with PMR, and push the boundaries within what I learn and feel is reasonable.
I wish you and everyone else the very best and full recovery or at the very least complete remission forever.