Posted , 178 users are following.
Hi I really need some help.
I had an iron infusion on the 22nd of March and since Thursday im feeling so bad: full of nausea, dizziness, headache and almost fainting.
Is it normal?
i think i have to go to hospital..
6 likes, 518 replies
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Flojoro any30878
Posted
i had my second infusion a week ago and i feel awful. dizziness, fever / flushes, very itchy stinging skin, bubbly belly and anxiety. GP has said i'm not to have them anymore as in obviously reacting. just wondered how long the side effects last for 😦
Salty78 any30878
Posted
Hopefully some of you are still following this thread. I had my first Fereheme infusion 7 days ago. I felt fine the day of the infusion but the next day and every day since i have felt as though I am dying. The nausea, joint aches, fever, shortness of breath are debilitating . i have taken Zofran for the nausea but it doesnt get rid of it. I was told that this reaction is rare...which didnt make me feel any better. if anyone reads this ..how long did your misery last and what did you do to get through it.
Thank you for your time in advance
Kfroi Salty78
Posted
hi. i went through the same thing, you can probably find my post on here with my symptoms.... immediate included rash and hives, swollen lumps on wrists, followed by all your symptoms, plus bad anxiety. I ended up being prescribed zofran, promethazine, and nexium for my stomach, and ativan for anxiety as needed. Once my stomach started feeling better, the anxiety started to go away. It took about two months until i started to feel normal and could resume working out.
Be your own advocate and continue to express concern until you feel better. good luck!
Salty78 Kfroi
Posted
Thank you. i am taking phenergren for nausea, xanax for anxiety and prednizone for joints. i will have my mom pick me up nexium. The Drs here are quite useless im afraid. I will keep you posted. Thank you again
andrew28896 Salty78
Posted
hi Salty78 can i ask how bad was youre shortness of breath and trouble breathing?.
how long did it last until you could breath normally again.
also how long did the chest pains last.
thank you for ANY help you or any fellow sufferers can !give!.
Salty78 andrew28896
Posted
The tightness in my chest lasted roughly two weeks. I still have the shortness of breath mainly in the morning. The nausea has subsided but not completely. i have my good days and then my not so good days. i am still very fatigued and just not myself. The anxiety is, for lack of a better word, ridiculous. Ive started a supplement called blood builder...my mother met someone whom was terribly anemic like the rest of us...he didnt have the infusion, he began this supplement and raised his feretin level from 4 to normal. i will never have another infusion. it has been over a month and i am still feeling overall malaise. Hopefully this response finds you well. Happy Holidays to you.
jolandie53260 any30878
Posted
Hi everyone
So sorry to hear all of you get so bad side effects.
I had e my second iron drip and my iron count still did not pick up i dont have bleeding in my stomach but i do have a heavy menstrual flow the first 2 days of my cycle what can be the reason why my blood does not absorb the iron can it be a lack of another vitamin maybe?
Thanks
Jolandie
Salty78 jolandie53260
Posted
perhaps try a product named blood builder. A chemo patient told me about it because he was severely anemic and it brought his iron levels up without the need of infusion. i am taking it and have been for a month. No side effects at all. I cannot take normal iron supplements due to constipation, nausea etc. But the Blood Builder i haven't had any issues. I go in for blood work on 1/15 I will post an update if levels are up.
mimi71304 any30878
Posted
i am reading your comments and just burst in tears, and that how low and how much pain I am in. this has helped me feel better. since I had the infusion on Monday morning I have been feeling like I m dying! burning everywhere, chest pain, headaches, joint pain and like severe flue symptoms. i went back to hospital and was given some morphine, it helped for couple of hours and back home I am feeling awful again, day 5 and due to have another infusion on Tuesday!! help please!
I spoke to my GP no answers just advising me to rest and take paracetamol ..!!!
help!
Kfroi mimi71304
Posted
Hi. I'm sorry you are feeling so awful, but I completely understand and empathize. I'd recommend taking to your GP and see about holding off on the next infusion. I felt achy, nauseous and like I was hot by a bus after my first infusion, and started feeling better before my second one, but that one did it. it was too much and caused so many issues(ou can see my other responses on here, but it was terrible and I wish i didn't do the second round. I Was even scheduled for a third but they cancelled that when I broke into hives and a rash). Advocate for yourself and feel free to say no to another round or ask about other options. Good luck!!
mimi71304 Kfroi
Posted
Thank you xxxxx
BA44810 any30878
Edited
Hi all,
I am a doctor although I'm posting here as a patient - I thought it may be useful to let you know about my experiences.
I had my first ferinject iron infusion approximately 1 year ago and at that time I said "never again". I had 4 weeks of feeling as though I had been poisoned - general muscle aches (myalgia), intermittent hot flushes and chills, constant nausea and not being able to think of anything that I wanted to eat or drink but forcing myself at mealtimes. The nausea was particularly awful - a really heavy, pit of the tummy type feeling. My blood pressure was also low (it usually is but this made it worse) so I have the nausea of feeling faint most of the time, too.
Then after 4 weeks of it, I woke up one morning and couldn't believe how fabulous I was suddenly feeling. I had so much energy, my vision was clearer (honestly!) and my appetite improved.
So, 2 weeks ago I thought I would be ok with another one. I'm now writing this feeling hot and cold with constant nausea and feeling like I am on the verge of flu. I'm struggling with my energy levels and feeling tired all the time.
On both occasions, for the first 24 hours after having it, my chest felt heavy and I noticed I was breathing faster and heavier than usual. I kept waking up in the night and feeling I couldn't catch my breath. Thankfully, this has resolved but I otherwsie feel dreadful. The first time I had my infusion over 1 hour (problem with the machine) but this time I had it over 30mins - I don't think this has made a difference to me.
I'm looking forward to mid December as hopefully I will feel great by then....it just feels a long way off at the moment. Oh, and yes, I'm back to thinking "never again"!
If you are wondering why Doctors don't tell you about these side effects its because they aren't really documented anywhere. Side effects on leaflets don't really state how long you have them for and I couldn't find any published literature on this.
I think I will try to set up a post-iron infusion survey here in the UK and ask patients to note their symptoms for at least 6-12 weeks after the infusion - I think that is truly the only way that people like us who struggle with symptoms can determine whether what we are experiencing is 'normal'...watch this space!
andrew28896 BA44810
Posted
thank you Dr, it is very helpful and assuring to have someone on the inside on our side.
as you know these symptoms are very real but just arent documented.
arlene90159 BA44810
Posted
**Thanks for the post about your experience. I'm extremely nauseous but if you say it disappeared after 4 weeks I have hope that I too will feel normal again! For now it's just awful.
bec86991 any30878
Posted
Hi everyone.
i had an iron infusion 15 days ago and im feel as though i am going to die.
-i have zero energy
i was so convinced that i was dying that i stayed awake and wrote letters to my children and husband.
i was fine before the infusion. i was getting up and making the house spotless everyday, mowing the lawn, going out and about but now i cant do any of it and its very frustrating.
no one can give me any answers as to whats going on either.
its very scary and im really struggling.
i just want ti be back to normal again, happy and laughing and playing with my kids again.
i wish i never had the infusion.
carmen45778 bec86991
Posted
im so sorry. im feeling the same but feeling also severe anxiety and depression . i feel so sad and havent been able to maintain the house either where as i was cleaning up every day. i feel very spaced out, foggy, detached and crying .. we are not sure what is going on . could be thyroid . looking into testing as ive got loose bowels and weight loss as well. are u feeling better ? im
not
bec86991 carmen45778
Posted
i have also had weight loss ans loose bowels. you sound so much like i was feeling. im doing much better now then i was.
i was feeling like it was never going to get any better.
it was the most awful feeling i have ever experienced. i had so many blood tests, mri, ultrasound but no answers so im putting it down to the iron.
im back on top of my house work again. it took some time but it has finally passed.
i hope you get some answers soon. keep me posted x
carmen45778 bec86991
Posted
thank you. its been a month already so i hope it goes soon . did yours last how long? glad youre getting better
bec86991 carmen45778
Posted
it was around 5-6 weeks that i had side effects. i was meant ti have another infusion next week but i am never going through that again.
i really feel for anyone that goes through it. 😦
carmen45778 bec86991
Posted
oh yes im definitely not having any ever again either ... its not worth the agony .
mary6760 bec86991
Posted
Hi,hope you are doing better.This is me and my infusion was 3 months ago!
bec86991 mary6760
Posted
hello Mary.
I am back to my normal self thank goodness. its almost been a year since i had the dreaded iron infusion.
I am so sorry to hear that you are going through the same thing. My advice is to just hang in there. I know its a horrible situation but you just have to keep pushing through it. 😦
I am so sad that there is no more information out there about this.
Sending you a hug. x
mary6760 bec86991
Posted
Thank you so much! I am so happy to hear that you are back to normal.It gives me hope.I was starting to believe that this is permanent!