Has anybody else reacted badly to an iron infusion?

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I'm awaiting surgery for multiple fibroids and becoming increasingly anaemic so had an iron infusion this week.

I was okay for the first 15 minutes or so but then felt like the skin on my chest was burning. This increased in intensity until I had nettle rash over my torso, neck and arms, with larger weals popping up here and there. My chest and back hurt like there was a strap pulling tighter and tighter around me and my BP sky rocketed.

It was all fixed with antihistamines, a steroid and time but I'm likely to need a second infusion. Has anybody had a similar reaction and tried a different infusion or had a second infusion with preventative meds?

It's been the shittest of years health wise. I'm hanging on by a thread and even the stuff which is supposed to make me better comes with a heap of hideous side effects apparently.

No Ive had two and never had a reaction. It sounds like you had an allergic reaction. The next one could cause anaphylaxis so you need to get a medical opinion before you have it.

I had a reaction very similar to yours. When I turned up for the second infusion they told me I couldn’t have it. Luckily when they tested my blood my levels had gone up a lot just from the first infusion.

Not as significant as yours, just one arm started bubbling up in hives. IV antihistamines (and possibly hydrocortisone?) fixed it. I think the next one they gave me a pre-med at the start but it was a while ago and I've had other treatments since then involving pre-meds so I can't remember exactly.

I doubt they'd try again for you without a pre-med but can you speak to someone to discuss what will happen next?

Depending on your levels they may suggest blood transfusion instead - I've also had that and it was easier (just slower).

I had this! Also due to bastard fibroids. It happened on my second one though (a couple of weeks after the first), and now I just state it as an allergy.

Years later ended up having a blood transfusion when my levels were low which went fine.

I did ask what would happen if I need a repeat as I was leaving and the nurse said they could probably try a different infusion but she didn't seem so sure. I don't want to risk an even worse reaction.

If they'd just fixed the underlying problem over a year ago when I first started haemorrhaging, I wouldn't be in this bloody mess. Ironically, I'm currently not fit for surgery and won't be unless they get my iron up and my BP down.

Who referred you for the infusion? Consultant or GP?

Yes, I had a very bad reaction at 38 weeks pregnant. Full 24 hours of fever, pain and flu-like symptoms.

Next day, right as rain. Had another infusion one week later and had multiple since, no other negative reactions.

I'm assuming they gave it to you in hospital? It's likely they will give you prophylactic cover with antihistamine if they were going to do another, and likely run the infusion far slower as this can help avoid a reaction. Or they might try a different type of iron infusion, or blood if needed.

I have had patients before requiring regular blood transfusions who would have a similar reaction and we would give antihistamines before we started the transfusion and they were fine, but your medical team will be best placed to advise and know what precautions and steps to take.

I hope things improve for you soon, OP!

The pre-op team following blood tests. However, the requesting consultant is listed as my gynaecologist, presumably because he referred me to pre-op in the first place.

Thank you. It was done in the day treatment unit of the hospital.

Speaking to my consultant isn't the easiest ATM. I've trying to speak to the waiting list coordinator for a week to no avail. I've been bleeding for 13 months, am in so much pain I'm genuinely considering chucking myself under a bus and my life has reduced down to a cycle of utter pain and misery.

I had a tickly cough about 10 minutes into the infusion so they slowed it down and I was fine after that. However my medical notes now state I have reacted to iron so I'm not sure what happens if I need an infusion in future.

Ring preop it'll be the anaesthetist guiding thr level targets not the surgeon. You may have come up enough with 1 dose. There's 2 brands of iv iron so could try the other

I'm really sorry youre finding things so hard, lovely. I wouldn't worry too much about speaking to your consultant solely about this, it's not really a consultant level issue in my experience ( I'm paediatric trained, and we tend to be a bit more risk averse than adults!) Do you have another transfusion booked? If so, you could try calling the day procedure unit to put your mind at ease. If not, when you next have one (if you need another one) it will be in your notes that you had a reaction and were given medication to help this, and depending on how proactive they are, they might have even got you written up for prophylactic cover when a doctor prescribes the next iron infusion. They should check when they admit you and do your OBS etc if you're ever had a reaction but it wouldn't hurt to tell them if it puts your mind at ease. If it's a day procedure unit, there will likely be a doctor in the vicinity, or an advanced nurse practitioner who can prescribe, who could write them up, and if there isn't or they need it from your team, they can bleep the on call gynae reg/SHO to write them up for you.

This falls into one of those categories that is super scary for the patient (understandably!) and while the medical and nursing team will absolutely take it seriously, this is all in a day's work for them and is easily solved.

I am sorry that your pain is so poorly managed and you're not getting any help though. If you've seen the pre-op team does that mean you've been given a date or not yet? Keep on trying to speak to someone at the hospital (PALS can be a big help with this!) and please do speak to your GP in the meantime if you feel able, about some pain relief or anything that might help with the bleeding (there are medications that can ease/stop it, but I don't know enough about your case to know if they would be appropriate, but they absolutely shouldn't be leaving you in this much pain, especially as it completely understandably affecting your mental health xx

I've got forms for bloods in 4 weeks. I suppose it's not worth chasing anything until I've had those done. And in the meantime, I still need to reduce my blood pressure because nothing is working in that regard either.

I've no surgery date and the pre-op isn't an indicator of anything. I was put on the urgent list for a hysterectomy and referred to the pre-op team at the same time because the urgent list is supposed to take a maximum of 12 weeks. The pre-op appointment came through after 16 weeks and last time I spoke to the consultant, he said possibly the end of July for the surgery given the current list. End of July would equate to a 7 month wait. Pre-op is good for 6 months.

I need to wait for bloods in 4 weeks to see what my iron levels are but they were very low so I've been warned I might need another.

The GP says they can't help me. I've tried absolutely everything to help the pain and bleeding. I'm on Zoladex, norethisterone and tranexamic acid. They've tried a coil (fell out), POP and some other medication. Nothing really works completely. The only pain relief I've got is paracetamol and it does precisely nothing. I'm up from 4am daily, howling in pain and begging for an end to it all. I've just started calling in sick to work because while work is all I have left, I can't even manage that. I don't go out, can't exercise, read a book, focus on anything. I'm just about surviving day to day and now I'm stuck in a hideous limbo where I'm no longer fit for surgery.

it's not wildly uncommon (possible explanations are a fishbane reaction or a true allergy...more likely the fishbane reaction though). Different preparation/slower infusion may be fine. But the first infusion may have done the job well enough anyway. It's important that the anaesthetist is involved (more so than the surgeon) and probably a haematologist if more treatment is needed.

They said it wasn't a fishbane reaction because it didn't stop when the infusion stopped and a couple of other reasons I can't remember. The nurse and the registrar who came to prescribe agreed.

Likewise. Ive had my surgery refused due to low iron.

I dont think its that uncommon to have a reaction to iron infusions. Im a night nurse and we never give them overnight because of the increased risk of reactions (and medication for potential reactions is always prescribed).
Hopefully they sort something out for you OP, and at least now they know how you might react!

Did they manage to get it back up again relatively quickly?

I can't go on like this for much longer.

They seemed to imply that it wasn't that common at the hospital. Google suggests around 1% of people react. But if dozens are having infusions each day, it must be a nearly daily occurrence?

The lady opposite me had antihistamines last time I went before her infusion as she’d had a prior reaction.

I was unfit for surgery when I had my fibroid surgery, my surgery was if the opinion that an Hb of 82 was the best I’d been in 6 months, so she was happy to do it. I started feeling better within days.