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

Hi everyone,

Hoping you are all doing okay. Just wanted to ask if anyone who had Ferinject experienced increased joint clicking? All my joints have started to suddenly click and clunk like crazy the last three weeks which is really unusual for me - I feel it through my shoulder joints and ankles too. (I am still taking calcitriol and phosphate but weaning off the phosphate).

Also did anyone still experience a lot of back pain around the 8 week mark? Mine is constant and driving me crazy (I have been returning to normal activities this week but nothing major).

I saw the endocrinologist today and he couldn't see any reason for the pain (or the clicking) and thought I might have to see a rheumatologist if things don't pick up. I hope it is related to the infusion and not something like fibromyalgia from all the stress this has caused. I'm so sick of second guessing every symptom and feeling terrible!

Any info I would be most grateful for - thank you.

Hi everyone! Does anyone know what could cause these issues if not low phosphate? I'm having similar symptoms to everyone here, and I had my last infusion a little over a week ago. My doctor wont give me a note for work because he said i shouldn't feel this bad...but the problem is that i do! But i went to the emergency room and convinced them to check my phosphate...but everything was fine, mine is 3.0. I would really appreciate hearing from someone if you have any ideas on what i can do or what this could be. My primary care doctor doesn't think i should be taking off of work either, but she doesn't understand/believe how awful i feel. When i was at work, I couldn't keep up because i was so ill. So happy I found this thread...good to know I'm not alone.

i cant believe ive been reading this discussion on here after i had my first iron infusion myself 6 days ago, been feeling really ill for a long time with my anemia because my body wasnt absorbing the iron tablets i was taking so my doctor decided to send me for a infusion, i was so looking forward to feeling much better & being able to get on with my life instead of being ill & sleeping all the time but omg! i have been absolutley dreadful, feeling sick all the time, stinking headaches that i just cant shake off, so so tired, more so than before, what the hell have happened here? why are we not being warned about these infusions? 

I previously had iron tablets instead of the injection of about 350-400 mgs in total, roughly 9 months ago and I also had most of the debilitating symptoms that were listed here for about 3 months before they started to slow fade away. I then just tried to do things normally and proceeded to gain back some weight that I lost previously and then for some strange reason, 4 months later, the symptoms started coming back. I mainly experienced extreme dizziness, weakness, nausea and I can sometimes hear my pulse thumping randomly when I lay down. I had a blood test in early January of this year, 2 months into this nightmare and my iron levels were recorded at 221 ug/L. I'm currently back to watching what I'm eating and trying to avoid iron rich foods until the symptoms go away. Hope you guys are doing okay. If anyone else has gone through this or something similar and is doing fine now, please let us know.

Hello,

I had an iron infusion about 3 weeks ago because I am currently in my third trimester of pregnancy and my hemotologist thought my iron was a little low. In the middle of the infusion my heart started to beat out of control and they had to stop the infusion. I have a history of SVT so this really freaked me out. A few hours later things calmed down and I felt better.

Then a few days later I woke up in the middle of the night with my heart racing, nausea, hot and cold, and elevated blood pressure. This same feeling continued for the next few nights and I literally was up all night long. I had never felt anything like this in my life.

A couple days later things went back to normal and I felt fine for about 2 weeks. Then this past Sunday it all started up again. The nausea was back, my heart was racing and pounding and literally no sleep. I was checked out at the ER where they did an EKG and some blood tests. I asked for him to check my phosphate level but he said that wouldnt be causing my symptoms. They said all was fine and sent me home. At that point I wasnt feeling bad. It seems to be the worst at night. Tonight my heart is racing and pounding, I keep getting chills and absolutely cannot sleep. I am desperate for help or insight on what to do. I have never felt this way in my life and its horrible.

Thank you

Hello Any, i hope you're feeling better.

I need some input. i had my first iron infusion 3 weeks ago. During the infusion i had pain in the injection site (they had to change hands) and I had a mettle taste in my mouth the whole time. I didn't tell the nurse because I didn't think anything of it. It took 1 hour to complete the infusion. That night I couldn't sleep. My heart was racing. I had a colonoscopy and endoscopy on the same day so i put it down to the eanesthetic. 3 days later i got a fever (i never get fevers) and was hit with terrible anxiety. I have suffered from anxiety in the past but this has been over the top. its been 3 weeks of intense anxiety. i cant seem to shake it. I don't even know if the infusion has worked because I have felt so drained from the anxiety. Before the infusion my anxiety was under control. Adding to the anxiety my usual GP has taken personal leave and I cant seam to get an answer from the other GP's. The moment you tell Dr's you have anxiety they dismiss you. I'm feeling so tired of feeling so anxious i don't know what to do. My heart rate is also very fast. I have googled anxiety with iron infusion and i have found nothing. I'm willing to admit its not the iron but it's the only thing that makes sense. I have not experienced anxiety like this in over 20 years. Has anyone else experienced intense anxiety after an iron infusion? If so, how long did it last?

I just wanted to say I am so glad to have found this forum!! like many others have stated this has been the ONLY place I have found this info.

in a nutshell: was in the hospital for 8 days with anemia .received 8 days of iv iron i have no idea what kind ( I live in Puerto Rico and unfortunately I have discovered the healthcare system is archaic and to put it mildly, horrible-but that is a whole other story)

was feeling much better at day 4, no nausea, dizzyness almost gone... but I got home 3 weeks ago and the terrible nausea and vomiting started, much more dizzy-vertigo, so tired.

the doc said maybe a stomach bug...

i stopped taking the iron pills, and started to increase my fluid and fruit intake. The past 5 days I've kept everything down but still feel so nauseous and anxious.

Thanks to all posting their stories and info it gives me hope and some answers!!!

I am new to this discussion. But I have the same problem and don't know what to do.

I had ferinject infusion (1 gram) 1 week ago and since that I have metallic taste, nausea, dizziness, headache and pain in my muscles and bones. I can't sleep.

I went to emergeny department yesterday because of this and got my blood results:

iron - 47

ferritin - 1640

transferrin saturation - 62

They are all too high!!!! I know that I have to wait at least 1 month to see the real results but I think they are already too high.

Anyone, please advise what to do to reduce ferritin? Or am I too nervous and it's early to do something?

Before my ferritin was 23, last yaer only 17.

Please give your opinions on my situation.

Thank you.

Its been 8 months since my two Injectafer infusions in January. And I find myself revisiting this forum. My experience post infusions was awful and very similar to so many of our stories. I began to feel better for awhile but it took 3 months. Ive never quite gotten back to normal, I don't even know what that is anymore.I cant go i the sun now it makes me sick, my face turns beet red. I've been having random joint pain, weird red hot swollen knee, shin, hips. Dizziness, headaches etc. Twice, Feb and Aug I went to the ER because the pain above my ankle was so bad I couldnt even walk, it was excrutiating to move my foot. Both times they insisted it was cellulitus. After the 2nd incident I got into my primary, he suspected gout. He ordered a dozen labs. Gout and RA are neg, but others that indicate Lupus are positive. Going to rheumatologist next week for diagnosis. Im so upset and my anxiety is really kicking in bad now. I can't help but go back and question the infusions triggering this. Whatever is going on, it started after the infusions. I'm trying to find information about iron being inflammatory. Can anyone point me to some sources? Anyone here going through anything similar this long after their treatment?