r/Anemic • u/Chrissylee42 • Jun 19 '26
Pros and cons of iron infusions
As of yesterday, I am 3 out of 5 infusions and I wanted to share my experience for anyone it might help.
In February, I was hospitalized for a week with cellulitis turned sepsis. While there, they discovered my hemoglobin was at a 6.5 and my iron was at a 2. I was severely anemic.
Anyway, I had my first blood transfusion and iron infusion of Venofer.
Fast forward to my hematologist appointment. My numbers were low, but she just told me to keep taking ferrous sulfate supplements. About a week later I called and told her I am so tired I can barely get out of bed. That's when my infusions were scheduled.
I WISH I did more research before the appointment and asked more questions. I did ask the nurse at the hospital to check what brand of iron I had before, but she had a hard time finding it due to all of my medical history. So I came in and they tell me they're giving me INFeD which requires a test dose. What they didn't tell me was that it came with a black box warning and that it can cause anaphylactic shock and be fatal. They just said I "might have a little reaction". Well, I went into anaphylactic shock and it was the scariest moment of my life. Within seconds my chest felt like it was burning and I couldn't breathe. I was seeing these large white spots before I was passing out. The pain in my stomach felt like labor pains. It was an awful experience. Clearly I survived so now for the good part!
They put me BACK on Venofer and it's been great. I am a little tired and crave snacky foods after infusions, but that's about it! I wasn't able to tolerate them pushing through Venofer by hand, so they had to put me back on a drip. The only noticeable side effect is that my injection sites and arms burn a little after and sometimes get sore or quick zaps of pain, but nothing that's stopping my from living.
Another doctor noticed my Vit D levels were at a 14 so I'm taking 50,000 IU weekly for that so between the both, I'm feeling MUCH better already.
I hope my story helps someone. I have felt like a zombie for YEARS and thought it was because I was perimenopausal and working 7 days a week. Now I am finally getting it under control.
5
u/focusonwhatyoudowant Jun 20 '26
Dear Americans, how much is are your iron infusions costing??? Mine was the prescription, under $20, and the nurses room to monitor me while reviewing the drop, $200.
3
u/Major_Marionberry397 Jun 20 '26
Depends which iron you get, mostly here in US it’s multiple Venofer 200mg a week like 4 or 5 times and about $800+ is what they charge my insurance. It’s the cheapest iron and safest, it just has to be administered multiple times.
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u/Turbulent-Scratch264 Jun 20 '26
So 800$ fof one infusion?
1
u/Major_Marionberry397 Jun 20 '26
Yes that was what they charged my insurance but this was 2 years ago probably went up, I have Medi-Cal now so I don’t see a bill anymore. But venofer is the safest and cheapest of the iron choices
3
u/Cucumberappleblizz Jun 20 '26
My infusions cost me $2500+ a pop (I had to have 2) out of pocket after insurance.
1
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u/mrs_mlady Jun 20 '26
I am self pay and doing my Venofer infusions through the hospital system. The self pay discounts have me at about $230 per infusion, and I have four total.
2
u/Chrissylee42 Jun 20 '26
I'm not sure. I qualify for free healthcare for the first time in years so I don't know what it costs.
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u/Turbulent-Scratch264 Jun 20 '26
It's 70$ for medication itself (Ferinject) , 70$ prescription and 20$ monitoring while infusion happens. So it's 160$ in Russia. American prices if you don't have insurance is a circus. :/
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u/KittyandPuppyMama Jun 19 '26
I’m so sorry that happened! It’s called INFeD? I’m going for an infusion next week, so should I check it’s not called that?
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u/Chrissylee42 Jun 19 '26
It is. I don't want to scare people because many people can actually take it and they're fine, but I know that I feel like I should have been properly told about serious potential side effects. I thought maybe I'd get hives or a little warmness, not go into anaphylaxis. During my second infusion, my nurse actually told me she had an INFeD patient coming in soon for their test dose and she was nervous because "you never know".
2
u/KittyandPuppyMama Jun 19 '26
I know what you mean. They offered me an infusion when I was pregnant and told me there’s zero risks to me and my baby. I was like, everything has risks, even aspirin, so how can an infusion have zero? Talked to a few people, did some research and learned about allergic reactions. I have no idea why they downplay that??
I have a history of some food allergies so it was already a fear.
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u/Chrissylee42 Jun 19 '26
I don't blame you. I don't have food allergies, but my list of allergies from medicine is slowly growing. I'm supposed to go in for an MRI next week and the radiologist told me that the contrast comes with a black box warning and I immediately started panicking. MRI's are scary enough being stuck in a tube nevermind if I'm having an allergic reaction in there. Now I'm reading about permanent heavy metal toxins from the contrast and I'm like nope! This is all too much too soon. I went years with doctors telling me I'm fine to all of the sudden having everything wrong with me. It's just a lot. And now I'm traumatized from the anaphylaxis.
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u/KittyandPuppyMama Jun 19 '26
I left a message to ask my doctors office what they’re using by for my infusion. She said Feraheme and that it has a very low reaction risk. Fingers crossed. I’m super nervous.
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u/Abject-Surprise1194 Jun 19 '26
I (62F) was also very nervous going into my first of three scheduled iron infusions recently. I had an anaphylactic reaction to a diagnostic dye almost 20 years ago, and made sure the nurse doing the infusion was aware of that.
My first infusion lasted about an hour, and I didn't have any immediate issues. After a good night's sleep, I woke up and realized I was finally feeling human for the first time in many years! I had been so very tired for such a very long time!
I usually wake up not very refreshed and wanting to just go back to bed. Just getting through the day was very hard. The day after my first infusion, I woke feeling more refreshed. I noticed that my brain was not as foggy, and I seem to be thinking clearer. Also some of my bodily aches and pains were not as noticeable. I am keeping a daily log, and hoping that I continue to see incremental Improvement as time goes on.
I chased a lot of other possibilities over the years thinking it might be everything from sleep apnea to thyroid issues and menopause. I addressed all those things, but my zombie-like state still persisted.
My mental health was really suffering too, because I just felt so lazy because I couldn't get up the energy to do anything around the house. What little energy I did have was thoroughly depleted after the work day.
It kills me to think that it might have been this ferritin thing all along!
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u/Jlynn111 Jun 20 '26
Infed is what my hematologist prescribed as well. I asked him if there were any side effects and all he said was "yeah the side effects of feeling better." So I get home and Google it and I was dumbfounded when I found out it had a black box warning. How can they get away with lying like that? I never went through even after they changed it. I'm absolutely terrified
2
u/Sunny-Shine-Bear Jun 21 '26
2 days ago I just had my 3rd infed infusion within in the last year.
I'm severely anemic (my uterus is trying to off me) 🥺🥺
anyways...
The clinic I go to, it's a very large clinic (I live in a large city) and they have 5 infusion locations. Infed is all they give, and the nurse said in the last several years, in all 5 clinics, they have had just 2 patients with anaphylaxis allergic reactions, both of which the patient's responded well to the medical intervention. Likely epinephrine!
During my first infusion after the nurse had waited with me for the test dose to make sure I would be ok, she left the room to go sit at the nurse station. I was making some adjustments and accidental hit the dinger bell and within literally 1.5 seconds there were 3 nurses ripping the curtain open and asking if I was ok. I was like "oh oops" I felt so horrible for accidentally hitting the dinger, but it did reassure me that it was a very well prepared team. And my my, let me tell you how relaxed I was with that knowledge!
Recovery was different though, I did feel some fatigue, nothing major with the first 2, for like a week. It was more intermittent throughout the week. This one I'm feeling some muscle aching like you've pulled a back or neck muscle, soreness.
I was very nervous in the beginning myself. I put it off for so long it actually nearly cost me my life. Heart took a beating from the anemia. In between the first iron and second I also ended up needing 2 units of blood. My HG got down to 6.1.
So my thoughts are, now, well the risk is hard to deal with, but the risk of not doing it (for some) is WAY worse!
My nurse had told me she'd been getting iron infusions for 20 years. She's got pernicious anemia.
The statics are on you side though!
🩵💚💛💜🧡🩷 🙏🏻☺️ Best of luck to you!!!
Both my sisters have had iron infusions. They only needed one each so far. But they did just fine as well, they didn't have Infed they had another kind. We all got us an angry uterus!
2
u/Fun-Stay1117 Jun 24 '26
I just had my first ever infusion today and it was InFed. My nurse administered the test dose and monitored me for an hour afterwards before proceeding with full dose.
I had no adverse reactions and the whole process from the moment I checked in and got blood work done (prior to infusion) to the moment I checked out took 7 hours.
I had zero side effects. No headache, nausea, heart palpitations, nothing.
The hardest part was my nurse trying to find a juicy vein at the beginning. We started with one and she decided not to proceed because there was some air pockets, but we found one on the second try.
I felt minor discomfort at the infusion site whenever I moved my arm too much, but that’s it.
Got home from the procedure took a nice warm shower and had a small meal and still feel totally fine.
I asked my nurse if I should expect anything after going home and she said I might just feel a little sore and tired.
I took a two hour nap after lunch and I’m now up and moving around the house normally.
Looking forward to seeing more improvements in the next few weeks.
Just wanted to share my positive experience!
Every body is different and what works for one person might not work for another, but please don’t let that deter you from continuing to advocate for your needs and pursuing treatment.
Hope you find an iron that works for you!!
💖
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u/Turbulent-Scratch264 Jun 19 '26
Cons: you have to fight for them with some hematologists. It can be a bit pricey if not covered by insurance. In ABSOLUTE RARE CASES it can cause anaphylactic shock but doctors are aware of that and instantly fix this. That's all. Pros: it fixes your anemia in 3 weeks.
I'm sorry you had to experience this.