Low iron levels and PMR

Posted by frenchfrank51 @frenchfrank51, 5 days ago

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.

I had a low iron reading in some of the earlier blood tests just after PMR diagnosis. I get a copy of all blood tests before doctor's appointments so we can discuss them, and I recall asking about iron being fairly low. My doctor pointed out the ferritin and something else (I can't remember what) were more important indicators of iron blood levels and they were okay, so there was no problem.

You say some were low and some were high. Maybe your overall tests showed no need for iron supplements?

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I had low values for hemoglobin, hematocrit, and RBC when I was diagnosed with PMR and GCA 8 months ago. I was really surprised at how quickly those values recovered once I started treatment with high dose prednisone (60 mg / day).

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@megz

I had a low iron reading in some of the earlier blood tests just after PMR diagnosis. I get a copy of all blood tests before doctor's appointments so we can discuss them, and I recall asking about iron being fairly low. My doctor pointed out the ferritin and something else (I can't remember what) were more important indicators of iron blood levels and they were okay, so there was no problem.

You say some were low and some were high. Maybe your overall tests showed no need for iron supplements?

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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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@jeff97

I had low values for hemoglobin, hematocrit, and RBC when I was diagnosed with PMR and GCA 8 months ago. I was really surprised at how quickly those values recovered once I started treatment with high dose prednisone (60 mg / day).

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Thanks Jeff.
My red and white blood count did the opposite. They both increased by a lot. I've been tested for GCA but don't have it. My blood results have always been good apart from low white cell count. When I suddenly felt very ill and could barely move my bloods were all over the place. The laboratory that did the tests rang me at home and told me I needed to see a doctor ASAP. First time my bloods have been so bad although I've been telling my doctors I've been feeling ill for a long time.
How long have you been on 60 mg of prednisone? I was only on 60 for 4 days then I had to taper down. I'm on 10 at the moment but I feel that isn't enough as my pain levels are increasing again.

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@frenchfrank51

Thanks Jeff.
My red and white blood count did the opposite. They both increased by a lot. I've been tested for GCA but don't have it. My blood results have always been good apart from low white cell count. When I suddenly felt very ill and could barely move my bloods were all over the place. The laboratory that did the tests rang me at home and told me I needed to see a doctor ASAP. First time my bloods have been so bad although I've been telling my doctors I've been feeling ill for a long time.
How long have you been on 60 mg of prednisone? I was only on 60 for 4 days then I had to taper down. I'm on 10 at the moment but I feel that isn't enough as my pain levels are increasing again.

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I was on 60 mg for about 6 weeks, and then it took 6 more weeks to get down to 40. My rheumatologist was cautious with my taper due to serious vision problems from the GCA. My vision is ok now. I started taking weekly Actemra injections about a month after starting prednisone. I'll be at 6 mg prednisone in a couple of days. Everything has gone well with my taper so far. I haven't had any pain since beginning treatment about 8 months ago.

I hope you get things figured out soon and find the right treatment.

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Same thing happened to me - I found the low iron trying to donate blood. One dried apricot a day helped. And it taste good.

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Yes, I had low iron detected at the blood donation center a few months before my PMR symptoms showed up. The first gp put me on iron tablets which gave me severe constipation. So I quit taking them and bounced back to my ‘regular’ self. It took 4 months to find someone who could diagnose and treat my PMR. I am now off prednisone and might go back and see if my iron is high enough to donate.

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I too have PMR caused post Covid vaccine. And have had it for quite awhile. I do take iron supplements and am down to 2 mg of prednisone and 300 mg of hyroxychloroquin - I changed rheumatologist from Mayo as Mayo practices when I went would not provide the hydroxy…. I’m so much better. But do take iron.

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Frenchfrank51
Several months after my pmr diagnosis, my CRP and ESR suddenly elevated.
Haemoglobin plummeted, despite iron supplements and excellent dietary intake of iron rich foods (minus the red meat ) . To the point Drs considered I may have internal bleeding.

Urgent PET scan however showed diffuse large vessel GCA .

Anemia very quickly corrected with immediate treatment with high dose prednisone &. Actemera.

To answer your question in my experience iron supplementation does not stop or correct anemia in inflammatory autoimmune diseases . It’s the chronic inflammation causing anemia .

And your CRP is alarming high !
I suggest you ask your doctors you be throughly checked for possible GCA inflammation as the cause of your anemia.

Wishing you better health.

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@54pontiac

Yes, I had low iron detected at the blood donation center a few months before my PMR symptoms showed up. The first gp put me on iron tablets which gave me severe constipation. So I quit taking them and bounced back to my ‘regular’ self. It took 4 months to find someone who could diagnose and treat my PMR. I am now off prednisone and might go back and see if my iron is high enough to donate.

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Thanks for your post 54pontiac..
I was just diagnosed with PMR and I was wondering if you could share a little bit more of your journey. My iron was also very low. I have read that PMR can cause your iron to be low.
I was diagnosed three months ago and they started me on a low-dose prednisone of 4 mg. My pain was gone by the next day. I feel lucky that it’s been controlled with such a low dose. I read so many stories about people starting at such a high dose when diagnosed. I saw my rheumatologist a couple days ago and he told me I could try to wean down to 2 mg which I did try and I had mild discomfort so now I’m trying 3 mg to see how that works.
My question for you is I was just wondering how long you were on prednisone and what dose they started you at and how long before your PMR went into remission.

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