Low iron levels and PMR

I was diagnosed October 2024, and because my RBCs were low (ferritin normal) I asked to start Vit B12, which I have been taking daily. Last week for the first time my iron was low so family doc put me on iron supplements. I was interested to see the information in this thread and will be asking my rheumatologist about iron when I see her end of month. Thanks to you all!

@johnbishop Thank you, John, so much for the citation. I'm going to read it now and continue to look around for additional similar information. I have a rheumatologist who is not the least bit helpful. My dentist knows more about PMR than he does.

Hi @kristinareb , better keep up the dentist visits then 🤔😄
And or consult with another Rheumatologist.
All the best to you .

Hi @maye,
I was on prednisone for a year and a half, off it a year, and then I relapsed. Back on prednisone, almost for a year. Now I'm down to 2 mg.
The second time with GCA, my symptoms were somewhat different from the first go round so I didn't recognize it at first.
Are you the first one in your family to get it?
My maternal Aunt had it, and my mother-in-law as well!
I'm glad you've had a quick recovery.
All the Best!

Short answer is yes I was prescribed daily iron supplements and it helped while my inflammation came back down. Longer answer is that yes, I too had low iron, hemoglobin, hemocrit and also faint visible banding in gamma region of protein results. I was the one asking my rheumatologist if it could be the result of ACI (anemia of chronic inflammation). She seemed surprised and a little dismissive. So I spent 3 months having GI docs rule out GI bleed and a hematologist rule out multiple myeloma. Thankfully it was all from my inflammation and everything is back to normal. After the inflammation came down (took me maybe 3 months) I was able to stop the iron. I don’t see how taking the supplements could be harmful. BTW it took 3 months to control my inflammation because I needed to switch from 1x daily dosing with prednisone to split dosing. I take half first thing in the am and half around noon. Works great. Down to 5 mg per day. Best of luck to you.

Hey @tsc
Oh genetic aspect of autoimmune diseases. Hadn’t thought of that .
I’m the only one in the family with pmr/GCA .

You had different GCA symptoms with relapse ?
I’m hyper vigilant to any symptoms of possible relapse.
Wondering therefore what your different relapse symptoms were ?
Because mine were quite minimal, probably sub clinical, until the night sweats started . That was the big red flag that sent me running to the Dr .

Yes, my iron levels were also low in the early stages of PMR. My rheumatologist conducts test at each appointment, and often says, “we will keep an eye on” anything that is high or low. Most of my issues have resolved on their own but I did have to add a Calcium supplement due to prednisone. I think my rheumatologist is extremely well informed and stays current on PMR research. Hope this helpful. Good luck! ❤️

Hi@maye,
My mother in law had night sweats and a sore jaw making it difficult to chew. I never did.
First time around, I had an itchy torso, three episodes of visual disturbance, I couldn't see anything out of my right eye, tender scalp, and short stabbing pains from my ear to my nose. Second time, extreme pain and pressure in my head and neck, somehat tender scalp. Both times I loss appetite, and felt faint in the morning when I woke up, I didn't connect the dots until I started feeling faint in the mornings. Second time around I thought I was just having aches and pains. I asked for a CRP test, because of feeling faint, and it was elevated.

Ah I see @tsc (pardon the pun)
I’ve not had any cranial symptoms.
Mine is pmr/ large vessel vasculitis.
However I’m alert to anything that could be temporal / cranial.
So far so good.
Still in remission , blood results normal ( except for expected neutrophils and liver enzymes because of Actemera ) , no symptoms or impediments affecting my usual lifestyle.
Just a lot of medical surveillance follow ups .

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.