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

Hopefully they will all pass overnight. The headache, dizziness and the whole body tingling and feeling hot side effects that I experienced had left me after 5-10 minutes into the infusion, I also developed chest pain half way through the infusion and has been troublesome since my knee pain and extreme fatigue built up day by day, this is "apparently" not normal, so don't let doctors tell you different, I had spoken to the company that makes and distributes the iron, as I stated in my previous comment because of the chest pain they had to fill out an uncommon side effect form to add to their records and to notify my doctor ( no names or other identifying information given to company or doctor(s) ) I was also informed the iron should be starting to work after about 4 days, it has to get into the bone marrow , etc, etc and we should feel the full effect by 10-14 days. I had to go to emergency lastnight as like you I have a job to walk and more frequent chest pains (I do suffer angina) and have spent the last 4 days in bed, it's even an effort to even try and talk. If this is how it makes you feel for a week I don't think I'll be taking my second infusion, this is horrible the way we feel when it's suppose to help us get better with what ever condition is causing our iron depletion.

I'm three days post-iron infusion (with Ferinject) and didn't have any symptoms until last night when the fever, chills, vomiting started. I'm actually feeling much better this morning so hopefully I'm past the worst of it.

Glad your feeling much better  😊 I’m on day 5 after mine & had quite a lot of headaches & dizziness but turns out I have a bad ear infection 😩 hopefully will start to feel a lot better soon 

Hi there, 

Do you feel any better? I’m a first time Ferrinject patient and 2 days in still feeling awful, just wondering how long it takes to recover?

It took me about two weeks to feel 100-percent again. It's now been eight weeks since my infusion - my energy is definitely up!

How long have you had these side effects after infusion ? My nausea, headache and hot flushes disappeared around 15 minutes through the infusion, although I had lost my appetite for close to a week. since I had some adverse reactions to the iron infusion I was advised by both my GP and cardiologist to cease further iron infusions.

Hi Natasha, 

I would like what kind of iron preparation was given to you.

Usha

 

i know this is almost two years ago but delayed sensitivity? will it eventually go away or would i have to go to the doctors. i just got done with second iron transfusion on monday the 9th of March and i started feeling like crap friday.. headaches, muscle pains, my period also was messed up.. also having oily substance in my urine.. i just need to know if what im feeling is normal. my doctor is on vacation for two weeks i have an appointment for the 8th of april but i need to know if i need to go to urgent care.

FIrstly let me tell you .. we both took 2 vails that’s is 1000mg in one go.. should’ve taken 1 / 500 mg for the first time... next mistake was infusion over 1-2 hours.. it has to be given in 20 min.. prolonged time can lead to release of free radicals .. which is not good.. imagine I knew it n still took 2 ( scared of multiple pricks for more infusion) to finish of the doses in 2-3 sittings instead of 6..I’m much better today, you please test for vit D n phosphorus levels...show a doctor , take rest , plenty of fluids, stay hydrated n maybe a simple paracetamol.. all the best .. hope you recover soon .. 

Thanks very much, Dr Deshan.  I have not taken Vitamin D supplement since this episode 2 wks ago.  Will take 2000 units and increase my intake of high phosphorus foods.  

Hi there, 

I had an iron infusion over several hours on March 26; right before Easter long weekend. I ended up in hospital for a week with excruciating abdominal pain, diarrhoea, and nausea. The vomiting also started but it was dry retching as they’re was nothing left in my stomach. Now nearly a month on and I’m still struggling with my stomach. I’m not able to eat properly as I have bouts of pain and nausea unexpectedly. It has been an awful, awful experience and had I known it would be bad, I wouldn’t have bothered. I feel like I’ll never be like myself again. My specialist gastroenterologist who was treating me in the hospital said it would my gastro system around 4/6 weeks to get back to normal. 

Hi Mimichacha,

I am sure your stomach issues will improve with time.  Eat foods which are easier to digest - white bread, ready to eat refined cereals (cheerios, Special K, Corn Flakes), white pasta, cooked vegetables and fruits you can tolerate.  Drink decaffeinated beverages, flattened gingerale.  Ask your gastroenterologist to refer you to a registered dietitian (not a holistic dietitian).  He or she can guide you as to how you can gradually switch back to your normal diet.  Hope, this helps.

Hi Dr. D,

I am curious about you referring to phosphorus. I’ve been having a terrible reaction to the iron for 10 days. Nausea, flu like, diarrhea, and finally went to the ER and my phosphorus was 1.5, supposedly in the low range. Do you have any ideas why that would be? Hope you’re still on here!

Thanks!

Hi.

I've had a bad experience with iron infusions recently. Went in for two of three schedules. The first one left me feeling nauseous, severe joint pain, swollen hands and feet, tingly feet but I felt better the next few days. Iron infusion #2 was fine days later. They gave me Venofer 500mg both times, and this time as soon as it completed I had swollen, raised lumps on the back of my wrists, panic began to set in and my feet really hurt. When I took off my socks my get were extremely swollen, my toes were blue and I had red/purple hives and welts up my legs. I had a rash on my stomach and chest, and nausea. Nurses immediately gave my Benadryl and hydrocortisone, which was very unpleasant. Took about 2 hours for hives to go away. Was discharged and was so weak, legs hurt to walk on.

Since the infusion (25+ days ago) I have had nausea, dizziness, lightheadedness, a bout of diarrhea, anxiety and panic attacks, and the last three days I haven't been able to eat. Went to PCP a week ago with all my symptoms ( because hematologist said it is too far out from the infusion, it's not the iron) and was prescribed Ativan for anxiety, tested for h pylori (was negative).

Went back a week later to see a different physician and she ordered blood tests. While waiting for those, the very next day I went to the ER because I did not feel right... Trouble sleeping, anxious, stomach pain and no appetite, nausea, I just feel like my body is turning on me. All vitals and basic blood work came back normal so they discharged me with zofran for nausea, but it hasn't helped.

PCP ordered blood work came back and my iron levels were raised to normal, but my ferritin was now 292 mg/mL (originally 6). I seriously wonder if I have iron overload and if it has slowly damaged my stomach. I just want to feel normal again. Work and activity take everything out of me, and I'm about to start a new job in two weeks.

Just wanted to vent and share my experience and maybe help others.

IV iron seemed like a quick fix but it doesn't come without risk, which I didn't know before going in to this. I never would have asked for this knowing what I know now.

Did anyone else have these problems so far out from the infusion? Did you get any answers or ever recover?

Thanks!!!

Hi.

Yes I had severe reactions to one iron infusion, My cardiologist ordered further scheduled infusions to be ceased. I suffered terribly for at least a month with lethargy, sore muscles and joints, I was actually bed ridden for a week after iron infusion.

When I had the iron infusion within 5 minutes into it I got chest pain, as I suffer from angina anyway I had a couple of squirts of GTN spray and chest pain went away, I got the expected side effect of feeling hot or flushed but that quickly disappeared. The next day was a completely different story and the start of a horrendous month, that was put down to my iron infusion, classed as a severe reaction .

Thanks for the quick response. I read your account of what happened and am in the same boat. The anxiety, lack of sleep and nausea with inability to eat are really wearing on me. I expected issues shortly after infusions but not getting worse three weeks post-infusion.

Hi Kfroi,

Things got a bit worse for me week 3-6, not sure why. It does slowly get better. I am 16 weeks out and able to function 30% better than 3 weeks out. The nausea was so debilitating, I thought I really might die. The anxiety and panic attacks in the morning hours were severe. That gets better. I promise.

 

Thank you for your response! I'm glad I'm not alone. I'm wondering if anyone's doctors ever suspected or tested for iron overload.

Out of curiosity, how much iron were you given, what type, and how many infusions? Thanks again!

I had 2 infusions last fall with no problems. This last one was one infusion of 200mg and 2 days later I started to feel really bad. It wasn't nearly as much as you had. everything escalated and went down hill from there. Went to the hospital twice for low blood pressure and shock like symptoms, shaking and fading out. I lost 20 lbs in 2 months.

Yeah, that's a lot less than mine. I went in to the hematologist today because I just can't function and they referred me to a GI specialist, and think it's primarily anxiety since I had a bad reaction. I'm on Prilosec for stomach issues, phenergan for nausea and Ativan for anxiety. No issues prior to all if this. I'm going to see my PCP Wednesday to see about a less addictive short term anxiety med to get me through this, as well as integrative care like acupuncture, etc. I'm trying to be as proactive as possible.

Thanks again for the response. I hope our experiences can help others.

Hi there, 

I noticed you were tested for HPylori, I ended up positive for that 3 weeks after my infusion. It explained why my stomach couldn’t settle. It sounds like you had an allergic reaction to your iron s8milar to mine. I’m 6 months post infusion and only recently starting to feel normal. I agree with iron overload though, my Dr said I should have been infused slowly rather than a large dose at once.  I also feel that too much iron damages your stomach and together with my HP infection, has made my recovery longer than expected. 

hi, i know this was over a year ago but i just got my iron transfusions the last two weeks and the first one was great, i felt refreshed then last monday i got my second one and this one has taken a big toll on me, in not sleeping, my anxiety is sky high, my body aches, i get hot flashes but my temperature hasnt passed 97.8. i het weird pains around my back which is weird because with my anxiety being so high i assume its my kidneys and maybe its not. my period has come but it wasnt even really a period.. i cramped up here and there but barely any bleeding. and i have an oily substance. i cant find any info how these two side effects but i have to wait two weeks for my doctor to get back from vacation.. so i dont know if i should just wait or go to urgent care..