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Feeling awful 10 days after Iron Infusion. Is it normal?

Posted , 178 users are following.

any30878
any30878

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

518 Replies

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  • crafdee5
    crafdee5 any30878

    Posted

    I'm new to this forum, but I am not new to anemia or infusions. My hematologists tried regular ferritin infusions over a 2 year period - these did nothing for me. Then, last fall they mentioned Injectafer and their clinic even helped me get a price reduction through the manufacturer. So, after some deep thought, due to costs and lack of previous luck with infusions, I decided to go for this treatment, even tho it is more expensive. I received 2 infusions late last Fall about 10 days apart - the good news is that within 5 days I began to feel like a new, non-suffering person... the bad news is that then within a month that wonderful healthy feeling started disappearing rapidly, even tho my blood numbers aren't low enough for more (my levels are just barely above normal, yet not low enough for doctors or insurance to approve more). The concern that is bothering me the most now, is that I'm noticing a deep energy draining feeling all over my body and a deepening depression. Has anyone else had similar after effects?

  • janette30416
    janette30416 any30878

    Posted

    My ferritin levels have fluctuated after having 6 infusions. I started them in March and I am now finished with them for 6 months. I had 1 a week and waited 2 weeks for my last one. I have went up only once and the others I stayed the same and this very last one, my level dropped after a week. I was told that I have to go on may 2nd for my last appointment with the doctor. They said I might have to go to a gastro doctor because I might be bleeding internally since my levels are not going up. I can’t find anything on the web regarding levels not going up. But I as well, feel horrible but I’m not in pain. Just tired and exhausted every day. I hate complaining about feeling tired because I know it could be worse. I have 9 kids (4 adopted) and I thought that’s why I am so tired but I found out that I have hoshimoto and I’m anemic so they said that’s why I’m so tired. But they still might send me for a colonoscopy. I’m 38 and NOT looking forward to this at all. Has anyone else experienced anything like this where your levels go down after having this done? I will let everyone know what happens just in case someone is having a similar issue.
    • sherellee_23677
      sherellee_23677 janette30416

      Posted

      Hi Janette I had iron infusion 5 days ago iron level was 2 and HB 97. I have never felt so sick in my whole life. Now tonight have temp 38........ I feel awful never want another one.
    • samuels
      samuels janette30416

      Posted

      Hi,

      ?Yes my levels fluctuate, I can't have any more iron infusions by order of my cardiologist, had severe reactions to it. I copped it both ends in one day, endoscopy and a colonoscopy as I tested positive in the FOBT test, but luckily nothing was detected ,and no blood loss was found, although they did find  a couple of esophageal? varices.

    • Capsicum
      Capsicum janette30416

      Posted

      I’ve had several colonoscopies and a gastroscope and a video capsule - they think I must be bleeding internally but can’t find where. I have infusions every three months. The iron levels go up then gradually fall again.  Good luck with yours!
  • sharlenafoster
    sharlenafoster any30878

    Posted

    Muscle cramps, nausea, vomiting, strange taste in the mouth, diarrhea, constipation, headache, cough, back pain, joint pain, dizziness, or swelling of the arms/legs may occur. Pain, swelling, or redness at the injection site may occur. If these of the effects continue or worsen then you should immediately consult to your doctor for better medication.
  • janette30416
    janette30416 any30878

    Posted

    I don’t understand this at all. It’s good to know I’m not the only one who had these done and my levels drop. But I really can’t find any information about what else can be going on as to why my levels drop. I have my next appointment on May 15th so I will see what happens and update it on this site just in case anyone else is having a similar situation. These definitely did not make me feel more awake. If anything, I want to sleep more. And I’m gaining weight like crazy. I don’t want to be complaining because it could always be worse. It’s just frustrating that no one could pinpoint why my iron levels are going down.
  • cathleen58968
    cathleen58968 any30878

    Posted

    It has been 24hrs since my first iron infusion (Iron dextran) which took 6hrs. During the infusion, I experienced back pain, mild headache and nauseated-probably because of the liquid smell (iron tablets made me throw up). After the infusion, I have abdominal cramps/pain, headache and whooshing sound in my ears until now, and I couldn’t sleep well, or even to take a nap. Doctor said these side effects are “possible” and told me to take paracetamol 3 Times a day until these subside. I don’t know how long til these side effects go away and I am worried because I need to go back to work tomorrow. ??

    • sherellee_23677
      sherellee_23677 cathleen58968

      Posted

      I had mine 2 weeks ago still have headaches had stomach cramps felt like I had been hit by a bus or dead...... The cramps in stomach intermittent now headaches not as severe but still there. Had surgery today no bleeds  all looks good. So still  no answers. Feeling slightly better today.... But still not good..... I told them today they can have it all but I won't be having it again. I never in my life felt so sick..... Good luck hope you feel better soon 

  • val21208
    val21208 any30878

    Posted

    My daughter was treated with Injectafer almost 2 weeks ago.  She became nauseated and dizzy during the treatment, but was told it had nothing to do with the Injectafer. She went home still feeling poorly and broke out in hives.  Starting having palpitations which worsened over 24 hours.  Went to the er with a resting heart rate of 150.   They put her on bp meds. Almost two weeks later she still has extremely high heart rate, bp, dizziness and shortness of breath with any activity or after eating.  No one will say that it can be connected to the Injectafer, but she was fine prior to taking it.  Any suggestions?
    • sherellee_23677
      sherellee_23677 val21208

      Posted

      Sorry to hear she is so sick I was fine before it but I really thought I was dying 5 days later... I was dizzy flat headaches high Temps heart rate was up. Saw Dr yesterday he done complete check know and recorded it all. I had flu vaccine a week prior to infusion so he said it would probably be masking his thoughts he said normally you feel better after it but if you don't we need to try something different. I'm having endoscopy and colonoscopy today so soon will know I hope.......... I never want it again..... Hope your daughter improves it is awful sending my thoughts for speedy recovery. 

    • val21208
      val21208 sherellee_23677

      Posted

      Thanks!  I hope you get well and get some  answers, too.  It’s hard because she lives several states away and has an almost two year old.  Hopefully things will improve.
    • samuels
      samuels val21208

      Posted

      Only suggestion I can make is severe reactions like I had with an iron infusion, my cardiologist placed an order for future infusions to be stopped. Feeling dizzy, short of breath and nauseated during or after iron infusion is normal, they do state in the consumer information sheet that these side effects are short lived. I have also heard palpitations can be a side effect, I can't answer why her  heart rate shot up at rest, but wise choice in taking your daughter to the ER.

    • meredith_10681
      meredith_10681 val21208

      Posted

      Hi Val,

      i looked up this topic as my daughter was experiencing many of the symptoms described here after her iron infusion last week (thankfully all seem to be subsiding). However, your daughter may want to look up POTS (Postural Orthostatic Tacycardia Syndrome). I have no idea if the onset could be related to her infusion, but her symptoms sound a lot like POTS - which my daughter has and had iron to try and alleviate the fatigue. Not many doctors know about it and I am struggling to find a specialist in Sydney. Good luck - I hope she doesn’t have it and that she’s fine now.

    • val21208
      val21208 meredith_10681

      Posted

      Thank you for this info.  Sorry about your daughter.  It’s hard when your children( even if they are adults) are ill.  I also have a son, my youngest, who is in treatment  for stage IV metastatic melanoma.  It would be great if my daughter would just miraculously get well.  She has an appointment at the end of the month with a cardiac electrophysiologist.  Hopefully he will have some answers. I will let her know about POTS. Thanks again!!
    • meredith_10681
      meredith_10681 val21208

      Posted

      Wow. I hope both your kids get the help they need. If she has POTS, her heart is actually fine (which still needs to be checked by the Cardiologist obviously), but it is an Autonomic Nervous System dysfunction. My daughter has a pretty normal resting heart rate when sitting/lying, but it skyrockets if she stands, worse when going up stairs and also bad after eating. I think she constantly feels dizzy, headachy, breathless etc and is really starting to struggle at school. Sadly, it takes an average of 6 years to be diagnosed with POTS (often misdiagnosed as anxiety), so I couldn’t help myself with letting you know it may be something to consider. Best wishes to you all. X 
    • samuels
      samuels meredith_10681

      Posted

      See if you can speak with this person(s).

      Professor Murray Esler and researchers at the Baker Institute

    • val21208
      val21208 meredith_10681

      Posted

      That’s interesting because she was diagnosed with anxiety disorder a few years back.  It’s hard to get drs to look past that.  The symptoms you describe are very much like what she is now experiencing.  I will definitely talk to her about it.  And my son is in good hands and being treated with surgery, radiation, and  immunotherapy which holds a lot of promise!Thanks again and thanks for the good wishes!! 
    • meredith_10681
      meredith_10681 samuels

      Posted

      Hi Samuels,

      firstly, thanks so much for taking the time to write to me. I have indeed contacted the Baker Institute several weeks ago and was told that Prof Esler is semi-retired and not taking any new patients. I have found a clinical pharmacologist in Melbourne too, but really need a neurologist and/or Cardiologist that specialises in POTS to make a definitive diagnosis. I've also found someone in Brisbane so it looks like I'm flying two hours in either direction to get some answers. I do have an email address for Prof Esler, so i may have to ask him for recommendations if i still can't get anyone in the next week or so. The earliest i can get an appointment (anywhere!) is September! I will keep persevering, but this is frustrating! Might need to pop over to the Mayo Clinic!

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