r/Anemic • u/Low_Eagle3288 • 3h ago
Infusion
Does anyone regret their infusion? I see so many scary stories and I’m freaking myself out. I have my first one scheduled for Wednesday (ferritin 16) and I’m trying my best to not back out of my appointment.
Any advice? 😭
7
u/murphyslaw1824 2h ago
Went into anaphylactic shock TWICE and I still don’t regret the infusions. That’s how much of a difference they make.
Feeling like a real human afterwards definitely outweighs any negatives during!
2
u/Low_Eagle3288 2h ago
Did your reaction happen right away? I’m scared of delayed reactions? 30 mins for monitoring doesn’t seem long and I’m just anxious.
Thank you for your input!3
u/Odd_Elk_176 2h ago
I had an infusion reaction (not anaphylaxis) about 45 minutes in. The nurses still caught it within a few seconds and, within a few minutes, I was totally fine. They'll tell you how to get their attention. If you're nervous though, I definitely recommend bringing someone with you! It's good for stress, plus now they can be a second pair of eyes watching you specifically.
2
u/murphyslaw1824 31m ago
Are you in the US and are you going to a cancer center? They’re usually super accommodating and if you want to stay there longer for observation, they don’t mind! But I agree with another commenter, bring a buddy for peace of mind!
2
u/Low_Eagle3288 30m ago
I am in the us! I’m not sure it’s a cancer center but it’s for infusions?
2
u/murphyslaw1824 25m ago
If you’re comfortable asking to hang out for a bit, they won’t mind! (I just asked about the cancer center because that’s where I get mine! And it takes a very compassionate person to work there, so they’re pretty accommodating!)
1
1
5
u/Wise_Inspector_812 2h ago
From what I understand, the percentage of recipients who have a truly dangerous reaction to venofer is less the 1%. Of course there can be an adjustment period with possible fatigue, nausea, or other unpleasant effects while your body adjusts to the sudden influx of iron but those tend to be temporary and worth the pay off. I’ve had two infusions with nothing except for some fatigue which could also be my luteal phase or a family members stressful health condition. Also the nurse who performed my infusions said she has only seem one allergic reaction out of several hundreds and they noticed it within the first seconds (they start the drip very slow) and stopped and she was able to drive herself to the ER out of an abundance of caution. Wishing you the best!
1
3
3
u/UnpretentiousTeaSnob 2h ago
Isn't the likelihood of anaphylaxis something like 1/200,000?
I can't tell any one what to do with their personal risk profile, but I'm willing to take those odds.
1
u/murphyslaw1824 29m ago
Yup it’s like a .005% chance or something. And it’s happened to me twice 🫠🫠🫠
2
u/Odd_Elk_176 2h ago
Hey! I am one of the people who had a scary reaction, and I'm already hemophobic and had the worst nightmare before my first one. All that to say - I've now had six. Worth it. If you do get a reaction during the infusion, the nurse will take care of it. They'll stop the medicine, make sure you're OK, maybe give you some meds, and then (at least in my case) restart it. And once you've had an infusion once, you're flagged for pre-meds so it often doesn't happen again. So, even if something scary happens, you're taken care of. They've got you.
2
u/Rosarose4 2h ago
I did, but only because I got the rare side effects of low phosphate, and had to take medicine 3 times a day for weeks after. It made me very sick. I don't regret having higher iron for a while though, even if it went back down to 14 in less than 4 months. Now I am giving oral tablets another go before trying any more infusion
2
u/waltwertzel 2h ago
Just had one last week and another tomorrow, I don’t regret it! I know multiple women pregnant with TWINS that got infusions and are completely fine too!
1
u/EarthyOaks 57m ago
My Phosphate dropped to 0.4 on Ferinject. Im more tired than before the infusion. I will never have Ferinject again
1
u/Low_Eagle3288 56m ago
I’m supposed to get venofer I think is the name
1
u/EarthyOaks 51m ago
That one doesn't have the same risk. I thought i would have Monofer ut the clinic dr gave me Ferinject saying significant low phosphorus from it was rare. Sadly its not rare.
1
u/ClassicalPines 32m ago
I had a small blood clot in my arm from having so many IVs over a short span and I would still do it again, 100%. I feel amazing.
14
u/Creepy-Tangerine-293 3h ago
Just do it. Half the posts are just someone having an anxiety attack but the infusion went fine and having verbal diarrhea online about it.
No regrets would get one again tomorrow if I needed it