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.

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boomermeg | @boomermeg | 1 day ago
In reply to @frenchfrank51 "Thanks megz. It's hard to know what's the best thing to do. I did show my..." + (show)
Profile picture for frenchfrank51 @frenchfrank51

Thanks megz. It's hard to know what's the best thing to do. I did show my own doctor the blood results and she said I needed to supplement and wrote a prescription for it. So I'm not sure which way to go. I may try them to see if I feel any better. My rhumatologist wants me to test iron levels again in six weeks which seems too long to me. Iron deficiency, as I mentioned, can cause a lot of the symptoms I've got.

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@frenchfrank51
I totally agree re symptoms can be very much the same as critically low Iron Saturation. Do you know your Iron Saturation number? That's the critically one. We'll feel lousy with low iron in general but it's the iron saturation that'll cause the horrific pain and other critical problems for us. What I did was do a Brave Search engine "search" for "how low does my iron saturation need to be to cause serious pain or other problems, and give ranges and what effects they have".
That showed me the different "categories" of ranges and what each causes. Might give you more info. I feel horrible too but just started 15mg Pred 2 days ago. Go for GCA Ultrasound tomorrow. If you're on 60mg Prednisone that in itself can make us feel lousy on top of PMR symptoms so I share your concerns. Personally, I research everything myself. Then I ask questions. Many Drs are so busy they can't possibly keep up with us as well as we can. I hope you feel better fast too. This pain is brutal and unrelenting.

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aliceoleary | @aliceoleary | 1 day ago

This thread is old but I’m still going to give my 2 cents worth. I was diagnosed with PMR six years ago and had successful treatment with prednisone I was on prednisone for about 18 months. The final taper worked and I have been free of PMR symptoms until the fall of 2025. At that time routine bloodwork showed slight CRP elevation, low hemoglobin and high ferritin. So I was technically anemic with elevated iron levels. Further testing revealed I have Hereditary Hemochromatosis (HH) which is excess iron and was treated with an aggressive series of phlebotomy. Meanwhile the PMR flare I experienced in late fall 2025 dissipated all on its own. By June my bloodwork was great. Everything where is should be including CRP that was undetectable. We began tapering and problems cropped up when I went from 4mg to 3mg. The doc immediately resumed the 4mg and that made things better for about 10 days. Now symptoms have returned again and I’m back to 5mg. I have found myself wondering if my ferritin levels are spiking as well as my CRP

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rlstonejr | @rlstonejr | 1 day ago
In reply to @boomermeg "It's important we understand the differences in the types of iron, iron saturation and Ferritin. High..." + (show)
Profile picture for boomermeg @boomermeg

It's important we understand the differences in the types of iron, iron saturation and Ferritin. High Ferritin with low iron saturation means that inflammation is blocking your existing iron from being used because Hepcedin blocks it. Hepcedin is released in response to the inflammation. In our cases, the inflammation from PMR likely caused the Hepcedin to rise, blocking iron saturation and increasing Ferritin.
Iron itself may have a "normal" number. Mine did, but my "Iron saturation" went to 9!!!
Found out about it via PCP NP. She set me up with IV IRON- Venofer (1x week for 5 wks). Mine is so low, it probably is causing at least some of the pain (that is like the PMR pain?). I read about how soon IV IRON can help the pain aspects and "overall health" aspects of low iron, and it will take some time to get better (pain can take weeks to months, and other things affected as well can take weeks). The simple fatigue type symptoms should improve faster.
Just started Prednisone for my SEVERE PMR pain. The fist dose day, I had at least about 4 hours I felt none of the upper back, shoulders, upper arms, fingers, wrist pain. Also stiffness is crazy. Back of thighs stiff too.
So, for a few hours first dose felt what it can be like to NOT have pain!!! Next day, pain came back and only felt some window of relief but continued to need pain meds because it's so severe. Then 3rd day, same thing. Feel a short window within the 24hrs where pain is lessened, but still need pain meds. I'm hopeful that after about 5 days-1week of Prednisone it might completely stop all this pain, but share the concern that the pain and damage from the critically low iron might take a lot longer to resolve (weeks?), even though I'm taking Prednisone. I pray it's not. The IV IRON hasn't helped pain at all yet, but only had 2 so far, 3more to go (1x a week). Relief cant's come fast enough.
You can still resesrch re your exact iron situation and learn exactly what's up or down and why. If it's iron saturation that's critically low, get a 2nd opinion re iron supplements or IV IRON. Depends on how critical yours is. If you should get IV IRON, DON'T take Iron supplements at same time as Iv treatments. Wait until all Ivs are done, get new blood test numbers and ask your PCP if need supplements or?
Blessings to all suffering such horrible pain and or disability from it.
PS, low iron saturation also can be due to a GI bleed, malabsorption or lack of iron in diet. Have to discover which.

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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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1 reply
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boomermeg | @boomermeg | 1 day ago
In reply to @boomermeg "It's important we understand the differences in the types of iron, iron saturation and Ferritin. High..." + (show)
Profile picture for boomermeg @boomermeg

It's important we understand the differences in the types of iron, iron saturation and Ferritin. High Ferritin with low iron saturation means that inflammation is blocking your existing iron from being used because Hepcedin blocks it. Hepcedin is released in response to the inflammation. In our cases, the inflammation from PMR likely caused the Hepcedin to rise, blocking iron saturation and increasing Ferritin.
Iron itself may have a "normal" number. Mine did, but my "Iron saturation" went to 9!!!
Found out about it via PCP NP. She set me up with IV IRON- Venofer (1x week for 5 wks). Mine is so low, it probably is causing at least some of the pain (that is like the PMR pain?). I read about how soon IV IRON can help the pain aspects and "overall health" aspects of low iron, and it will take some time to get better (pain can take weeks to months, and other things affected as well can take weeks). The simple fatigue type symptoms should improve faster.
Just started Prednisone for my SEVERE PMR pain. The fist dose day, I had at least about 4 hours I felt none of the upper back, shoulders, upper arms, fingers, wrist pain. Also stiffness is crazy. Back of thighs stiff too.
So, for a few hours first dose felt what it can be like to NOT have pain!!! Next day, pain came back and only felt some window of relief but continued to need pain meds because it's so severe. Then 3rd day, same thing. Feel a short window within the 24hrs where pain is lessened, but still need pain meds. I'm hopeful that after about 5 days-1week of Prednisone it might completely stop all this pain, but share the concern that the pain and damage from the critically low iron might take a lot longer to resolve (weeks?), even though I'm taking Prednisone. I pray it's not. The IV IRON hasn't helped pain at all yet, but only had 2 so far, 3more to go (1x a week). Relief cant's come fast enough.
You can still resesrch re your exact iron situation and learn exactly what's up or down and why. If it's iron saturation that's critically low, get a 2nd opinion re iron supplements or IV IRON. Depends on how critical yours is. If you should get IV IRON, DON'T take Iron supplements at same time as Iv treatments. Wait until all Ivs are done, get new blood test numbers and ask your PCP if need supplements or?
Blessings to all suffering such horrible pain and or disability from it.
PS, low iron saturation also can be due to a GI bleed, malabsorption or lack of iron in diet. Have to discover which.

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@boomermeg Forgot to say that I started the IV Iron "Venofer" prior to the PMR diagnosis, due to my Iron Saturation at 9.
I've had 2- IV's so far but it didn't reduce any pain. It seems like a lot of people and Dr's don't know or believe that critically low iron saturation can cause severe pain. Has anyone else experienced that with their PCP? Getting intermittent pain relief and today is day 4 of 15mg Prednisone. It's been a very long haul of brutal pain, sleep deprivation that's tough to quantify and being unable to do even the most basic things. Had to spend at least 3-5hrs every morning trying to get out of pain and be able to lift arms or bend fingers. Mine affects my fingers too. This disease has opened my eyes to the type of suffering autoimmune diseases cause people. Grateful for this PMR group. May every person living with this have relief and recovery. Blessings.

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boomermeg | @boomermeg | 1 day ago
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.

Jump to this post

@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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rlstonejr | @rlstonejr | 11 hours ago
In reply to @boomermeg "@rlstonejr I'm so sorry to hear everything you're currently going through and have gone through since..." + (show)
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

Jump to this post

@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

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rebeccaheard | @rebeccaheard | 8 hours ago

My iron level is not low, but when my bloodwork came back, the Rheumatologist said my Vitamin D was severely low. She gave me a prescription Vitamin D which I take one day per week for 12 weeks and then I can get over the counter Vitamin D after that. I just read an article that said almost 100% of people with PMR have low Vitamin D.
It's crazy how there are so many things associated with this disease.

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