Low iron levels and PMR

@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 .