1. < Polymyalgia Rheumatica (PMR)

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.

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marmille | @marmille | 3 days ago
In reply to @jeff97 "I was on 60 mg for about 6 weeks, and then it took 6 more weeks..." + (show)
@jeff97

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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Thank you for the information. Did you try Kevzara?

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1 reply
jeff97 | @jeff97 | 3 days ago
In reply to @marmille "Thank you for the information. Did you try Kevzara?" + (show)
@marmille

Thank you for the information. Did you try Kevzara?

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I just checked online, and my search indicated that only Actemra is approved for GCA, while Kevzara is approved for PMR. I have GCA and PMR, so I have only used Actemra. It has worked well for me so far. I'll be tapering down to 6 mg prednisone in 2 days.

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54pontiac | @54pontiac | 3 days ago
In reply to @mimi1204 "Thanks for your post 54pontiac.. I was just diagnosed with PMR and I was wondering if..." + (show)
@mimi1204

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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I was started on 10 mg and it took several weeks for my inflammation to disappear. Then I felt like superwoman. After a few more weeks, the rheumatologist said I should start tapering at my own pace. I chose the dead slow taper which is available on many lists. Basically I went down 1 mg every month, alternating days with the new dose, until I hit 5 mg. Then I went down .5 mg a month until I got to 0. That took about 15 months. The only trouble I had was going to 1.5 when my back acted up for a few days. Then one knee. But now I’ve been off for 2 months with no flares. I am not the woman I once was, but I feel 70 (my real age) instead of 100 (with PMR). If I were you I’d cut the pills in half and go down .5 per month (or longer) and see if that works better. I am not a doctor, but from what I’ve read of others’ experiences, it seems the slower the better. Good luck!

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heyleise | @heyleise | 2 days ago

Each journey is unique. Mine took a while to diagnose and relief was, gratefully, immediate. Weaning had ups and downs. I was caught by surprise with a dental surgery burst of pain. Better prepared for a knee replacement. I was off prednisone in 2018 - didn’t get Covid until 2022. 6 weeks later ugh. And another bout in 2023 after a river cruise Covid. Talk about predictable

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1 reply
heyleise | @heyleise | 2 days ago
In reply to @heyleise "Each journey is unique. Mine took a while to diagnose and relief was, gratefully, immediate. Weaning..." + (show)
@heyleise

Each journey is unique. Mine took a while to diagnose and relief was, gratefully, immediate. Weaning had ups and downs. I was caught by surprise with a dental surgery burst of pain. Better prepared for a knee replacement. I was off prednisone in 2018 - didn’t get Covid until 2022. 6 weeks later ugh. And another bout in 2023 after a river cruise Covid. Talk about predictable

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What has worked for me is masking during travel. Moderna vaccines. And most recently - 6 weeks afterwards emergency surgery - a quick prednisone hit 4 days 5/2.5/5/2.5 then 4 days 2.5 then 4 days 2.5/0/2.5/0

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heyleise | @heyleise | 2 days ago

Oh and with the daily apricot, the constipation goes away!!!

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frenchfrank51 | @frenchfrank51 | 2 days ago
In reply to @jeff97 "I was on 60 mg for about 6 weeks, and then it took 6 more weeks..." + (show)
@jeff97

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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Thanks Jeff.

I hope you continue with your progress too. Thanks for your comments.

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frenchfrank51 | @frenchfrank51 | 2 days ago
In reply to @megz "I had a low iron reading in some of the earlier blood tests just after PMR..." + (show)
@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.
Maybe you're right and iron supplements aren't necessary. I have to test again in about six weeks and if they're still low (assuming my inflammation will have decreased) I'll ask my rhumatologist to give it more thought.

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1 reply
frenchfrank51 | @frenchfrank51 | 2 days ago
In reply to @maye "Frenchfrank51 Several months after my pmr diagnosis, my CRP and ESR suddenly elevated. Haemoglobin plummeted, despite..." + (show)
@maye

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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Thanks maye.
My PMR was only diagnosed because of a single blood test that showed the elevated CRP, Sed rate and a host of other things that have always been in range.

I have been checked for GCA, had scans, MRI 's, xrays, checking for vascular problems, infections etc but GCA has been ruled out. The stopped short of doing the biopsy because they thought it wasn't necessary after performing all the other tests.

My CRP has gone down from the 178 to 17 a week ago. I've gone down front 60mg of prednisone to 10 but the pain and stiffness comes back at that level. So I've had to go up to 15 for the past few days. Not what I want to do but I can barely move otherwise.

I have to test for iron again in about six weeks and if it's still low I'll get my rhumatologist to give supplements a thought. It'd be better if I tested for it sooner of course.

Good health to you too.

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1 reply
megz | @megz | 2 days ago
In reply to @frenchfrank51 "Thanks megz. Maybe you're right and iron supplements aren't necessary. I have to test again in..." + (show)
@frenchfrank51

Thanks megz.
Maybe you're right and iron supplements aren't necessary. I have to test again in about six weeks and if they're still low (assuming my inflammation will have decreased) I'll ask my rhumatologist to give it more thought.

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Sounds like a sensible plan.

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