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I’ve been really unwell following Ferinject

Posted , 4 users are following.

RachelL1974
RachelL1974

Ive had several iron infusions but the last two one being end of last year and my most recent one has left me feeling really unwell. Two days after the infusion I began with fever like symptoms, one minute shivering and the next burning up, along with that Ive felt nauseous, loss of appetite, headaches and painful back and lungs. Im awaiting a loading dose of B12 as its significantly low - could that have an effect on how Im feeling? Has anyone else experienced anything similar?

Thank you

0 likes, 6 replies

6 Replies

  • katy_80
    katy_80 RachelL1974

    Posted

    Hi Rachel,

    Just found your post - have you had your phosphate level checked? It sounds like you've had a similar reaction to mine - it's nearly 8 weeks since my Ferinject infusion. You need to get this checked as phosphate is vital and not many doctors know about this reaction. If you need to print out anything google 'hypophosphatemia and ferinject' - also check out the other thread on this site: 'Feeling awful 10 days after Iron Infusion. Is it normal?' and look at the most recent six months worth of posts. If your phosphate is indeed low, it will need treatment and I suggest printing out info to take to your doctors to ask for a referral to a specialist endocrinologist.

    Hope you are doing okay.

    Katy

    • RachelL1974
      RachelL1974 katy_80

      Posted

      Hi Katy,

      Thank you for this information I've had the reaction twice but in previous years had no complications at all. I will certainly read up on it as I'm reluctant to have another infusion after the reaction I experienced. Do you know if low phosphate can make you tired as i still feel lethargic after a loading dose of B12?

      Thanks Rachel x

    • katy_80
      katy_80 RachelL1974

      Posted

      Hi Rachel,

      I too had had one previous ferinject infusion a couple of years ago and had no side effects at all. From what I've read this reaction can happen in subsequent infusions and they don't know why.

      Yes low phosphate can make you feel exhausted! This time, in my case, within four days of having the infusion I felt extremely fatigued, weak, breathless and sore in my back. I also got tingling hands and headaches within one week. I also felt quite oddly anxious.

      Definitely print out some information and show it to your doctor and ask for your phosphate level to be tested: if you google "Symptomatic hypophosphataemia after intravenous iron therapy: an underrated adverse reaction" there is a link there to a case study regarding the phosphate drop post-Ferinject. Also google "Severe hypophosphataemia after intravenous iron administration" and a BMJ case report comes up. (The message board won't let me post the links.). If you take these printouts in, it may just help convince them to test your phosphate in case they try to refuse for any reason (which seems to have happened to some other people on this board).

      It may not be phosphate but it sounds awfully similar to what me and several others on the other thread on here have experienced. It seems to be a problem mainly with Ferinject in particular. Phosphate is a vital electrolyte for your whole body to function so it's important to rule this out if you're still feeling terrible! All the best and report back 😃

    • katy_80
      katy_80 RachelL1974

      Posted

      ps. how are you feeling today? Do you have any other symptoms other than tiredness?

  • linda91485
    linda91485 RachelL1974

    Posted

    Just come across this thread. Very difficult to find anything specific on it. Suggestions of web sites to view very useful and informative and eased my mind a bit that i am not the only and am not imagining things!

    I had an immediate reaction which was pretty scary. these included buzzing in head and ears and felt as though i was going to pass out, flashing lights before my eyes, difficult to breathe, wheezy chest, pains in stomach. i managed to call the nurse who stopped the drip immediately. she then checked blood pressure etc and then gave me an antihistamine injection and another one into the drip and restarted the infusion after about half an hour. i did ask nursing staff about any side effects who assured me they were rare. main reason i am posting is because it seems as though i have had similar after effects to others in this thread. now 11 days after the infusion which was ferritin - i am still feeling sick on and off, dizzy, whoozy head, pains in head and elsewhere, tired all the time. i also have chronic kidney disease and am having lots of pains in them, as well as stomach pains and feeling tired all the time. i also havent been able to eat proper meals for the past three days, just dry biscuits and cups of tea. if things dont improve i am going to ring the clinic where i had the infusion done and see what they say about it all.

    i hope everyone else is beginning to feel better.

    Linda

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