1. < Polymyalgia Rheumatica (PMR)
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Low iron levels and PMR

Posted by frenchfrank51 @frenchfrank51, Mar 10, 2025

Hello all.

I've just been diagnosed with PMR following a recent blood test that showed various anomalies, some of which were way out of the normal ranges. CRP, for example was at 178 when the reference range is less than 5. All of these anomalies I've never had before. They came out of the blue although I've been feeling unwell for a while.

One area where levels were too low was my "iron panel". Most of my iron, ferritin, transferrine levels were either too high or too low. I've asked my rhumatologist if I need to supplement with iron while it's low but she told me it's low because of high levels of inflammation (which I agree with) but she told me there's no need to supplement.
But, having low levels of iron, short or long term can cause some of the symptoms of PMR itself.

Has anyone had any experience in this aspect of PMR? I'm just wondering if I should supplement with iron tablets and whether that may help in some way.

Thanks in advance.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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mjdcl57 | @mjdcl57 | Aug 5 11:42am

First, I hope everyone out there is doing as well as can be hoped for. I was in weird, achy pain for 18 months (perhaps longer) and finally got a diagnosis. Interestingly, I have very low iron levels as well as low vitamin D levels (I live in Oregon, where the absence of winter light makes the low D level common).

I've been on 20 MG prednisone for about three months. Great results ... starting to taper. But ... I have notice that my hands are stiff and achy every morning. I'm functional (I'm typing this as proof), but I always feel like I just worked with stiff garden clippers for three hours - that weird kind of ache.

Any thoughts? Any advice? Does ice help? Heat?

One more note: I'm physicallyl active and hit the gym a lot (I'm a 69 year old male), but I have noticed that my strength is about 20% less than pre-PMR. Maybe I'm just getting older, and that's okay. But if it's PMR-related, I'd love to hear anyone's thoughts.

Thanks and best wishes to all of you!

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rlstonejr | @rlstonejr | Aug 5 12:08pm
In reply to @boomermeg "@rlstonejr It sounds like such a nightmare for most people when they try to taper down..." + (show)
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@rlstonejr
It sounds like such a nightmare for most people when they try to taper down the Prednisone. I just got diagnosed 6 days ago and started 15mg. Not enough to stop the brutal pain or all the symptoms so just went up to 20mg this am. I can't imagine the concern you and everyone must feel about tapering and flares. For myself, I will be full of trepidation for the pain to return. This has been the most brutal pain I've experienced, next to nerve pain. My pain is in my shoulders, upper back, back of neck, upper arms, fingers. Some stiffness in back of thighs too but not a lot of hip pain. The stiffness in legs trying to stand up was a surprise too. Anyway, getting a little better so I know there's hope for relief. Just realizing it's going to be a tightrope act to taper.
I've been reading all through this PMR section of comments re different aspects of PMR and see some people trying different types of meds to taper with, including Hydroxychloriquine, Methotrexate, and a few biologics. I haven't researched them all for side effects nor for use with PMR but I will. Hydroxychloriquine has been around for so many decades and is incredibly safe, in spite of the lies during the pandemic. I hope you can find something that works to help taper without having the flares. It's so difficult to explain this disease, it's symptoms and the severity of the pain to people who don't have it. But those of us who do have it know none of us wants the pain to flare, not to mention the rest of the symptoms. Blessings

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I tried Hydroxychloriquine for over a year - no help for me. Tried oral methotrexate - made me sick. Tried shots - made me sick. Now trying Leflunomide which got me from 6 mg to 5mg but I flared trying to get to 4.5. Now I’m back at 6.5 mg working my way back down.

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stonewheel | @stonewheel | Aug 6 8:23am
In reply to @rlstonejr "THANK YOU @boomermeg I’ve struggled with this for years. Normal iron, low iron saturation and very..." + (show)
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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@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.

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