Scary reaction after iron infusion - seeking similar stories
I have heavy periods. Have felt awful for years with baseline to moderate anemia. Doctor prescribed 3 infusions of iron since years of oral iron did not do anything.
First injection - Came home with some heavy, almost leaden feeling in my chest and abdomen. Was a new feeling to me but it went away. I thought that was normal.
Second injection - same heavy chest feeling but it came on sooner, on the way home. I thought it would resolve like last time. But it escalated quickly - like an attack. I saw stars, had sense of panic, felt like an elephant on my chest. Called 911. BP super low and I’m sweaty and pale. After getting IVs from EMS, I felt better but still went to the ER. Left a vague summary of fishbane reaction.
Third injection - the injection center wanted to try again, slow it down and take Tylenol and a Zyrtec before treatment. Looking back, they should not have tried it again.
I tolerated the saline fine but as soon as the iron touched my body, I’m talking about within seconds, I had the same reaction as before, but much more intense.
This time the pain started in my chest and migrated quickly to my lower abdomen/uterus. It was the most incredible pain I have ever felt, like unmedicated childbirth. It was literally screaming in pain. They called 911 and the medics took me out. I really only felt better with morphine.
The nurses in the cancer center where I got the iron transfusion said they didn’t think it was iron, that they had never seen anything like that.
I’ve done my own digging and I sense this has to do with MASC. I am having to advocate for myself since my primary doctor doesn’t know much about it.
I set up an appointment with an allergist and also asked to talk to a doctor hematologist and not a PAnin hemo. The PA actually said she wants to try the iron again but with steroids. Obviously, I’m terrified and I don’t feel like anyone is taking seriously the reaction that I had. It felt life threatening.
I’d be very appreciative of any insight from the group if you have experienced or heard of a reaction like this. I’m particularly interested in the lower abdominal pain that I felt because it was so intense and unusual and I can’t really make sense of it. I know that mast cell can involve muscle muscles or soft tissue is it? Because I have heavy periods I’m recently on progesterone if that contributes.
Has anyone had a reaction like this specially to iron infusions?
Seeing allergy and hematology. Any other places I should start? Who quarterbacks your care?
If this happens again does an EpiPen help?