Actemra usage and high iron

Possibly ... in some patients. What does your doctor think?
https://www.researchgate.net/publication/384818498_Tocilizumab_a_Humanized_Anti-interleukin-6_Receptor_Antibody_Induces_Hepatic_Iron_Overload_in_a_Susceptible_Patient
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This is new to me so I don't know. The above was a case report so it probably needs more research.

Depends on what iron test you are talking about. Serum iron (or total iron) will go high just based on recent diet or supplement alone. Other tests like % saturation (normal 20-48), iron binding capacity (250-425 mcg/dL) and ferritin levels are needed to determine if you have sustained high iron. I have been fighting iron deficiency since May, so I got a quick education in this.

I developed GCA and PMR i August
I was on 60 mg of prednisone which is now down to 20 mg
I have had 3 Actemra infusions. I look awful with gard knots that swell on my face, upper arms and back. My neutrophil count was 130,000 as of today
Shouldn't I be concerned?

Very high iron in your blood is likely caused by interestingly enough, low Hemoglobin in your CBC panel - meaning you are anemic. I was diagnosed with Anemia of a Chronic Disease likely caused by PMR back in 2019. At the time my Ferritin levels were over 1,100 ng/mL, normal is below 200. Do not take any iron supplement or eat foods high in iron - it can cause severe problems including death if you are having problem metabolizing iron.

The iron is available in your blood if you have high Ferritin levels, your body is not absorbing it correctly right now. How your blood absorbs the iron in your blood is like all other metabolic processes a complex. Without going into details just know it is not simple. I would encourage you to research this some online then talk with PCP to understand what you can/should do to help manage it.

When I am on prednisone my anemia gets better. This September my Ferritin was 140, normal. Last year it was high. It does pop in and out of normal now.

@jabrown0407 thank you for your reply and advice, I will meet with a hematologist next week for further testing

Back in 2019 I met with two local hematologists. The second one was the one that Dx the Anemia of a Chronic Disease. This goes untreated because the cause is unknown (some chronic disease) and until they know the cause and treat the cause, the anemia is not treated. I do know of someone in a similar situation who has required blood transfusions if the anemia gets significant enough, mine never has.

Just so you know, hematologist deal with blood cancers - meaning the bone marrow is not working correctly. They do not deal with many other problems you might see in the blood.

My second hematologist said concisely "You have problems in your blood not with your blood." This meant that the bone marrow was doing a great job, but my blood had bad labs because the normal metabolic processes were not working as they should be. One of the main functions of your blood is to provide needed oxygen to your body, the other is to deliver the blood to your kidneys for them to cleanse your blood of things that need to be eliminated. There are many other functions, these are simply to top two.

Hope this helps you going in the door. I wish you the best. I hope that the hematologist does not find anything they need to treat.