I was just wondering for those of you who have had an Injectafer iron infusion, did you have any complications or side effects?
I finally managed to get one (1000 mg in a saline solution) in Sydney on Thursday (five days ago).
I've had flu like symptoms, elevated temperature, aches and pains, a rash, nausea, no appetite, no energy and a horrific headache along with itchiness.
I see there is a class action lawsuit against the manufacturers and that it can dangerously lower levels of phosphate / phosophorous in the body.
I wish I had read a little more on other websites!
Hopefully these symptoms will go away.
I would love to hear others experiences.
Thank you so much!
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Ureshi17
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We cannot get Injectafer, precisely, where I am, but I have had the nearest equivalent, plus iron sugar as well - five infusions in all.
But my doctor never gave me more than 100 or 200 mg at a time, with a few days wait in between. The first infusion was over three hours, watched carefully all the time.
I had no problems at all, in fact I immediately felt perkier.
Only three to four months later did I feel that the RLS was considerably ameliorated. The pesky stuff goes on a world tour before it deigns to reach the brain. So be patient, hopefully the future will look brighter by July.
But you are correct, Pharma can be rather sparing of the truth if it serves them, and they should be whacked for it.
I just had a quick look into the iron for RLS report by the IRLSSG again, as I finally will get a referral to a specialist willing to consider to give iron infusions to people with RLS. The 1000mg dose for Injectafer is normal as it is “slow release” formula, whereas the 100-200mg dose for iron sucrose is also normal as this is a “fast release” formula. Ureshi, I hope that meanwhile the side effects have settles again with no remaining harm. Apparently you are among the unlucky few. As we often say here, we are all different. I also hope that you are beginning to notice positive effects.
I'm so thankful the horrible side effects are dying down. I'm having my blood phosphate levels tested though. There hasn't been any effect on the RLS though yet. I think it will take several weeks more at least, to see what sort of impact it has.
I've had two InjectaFer treatments, and had no issues at all with them. In my case, each treatment was divided into two 500-mg doses a week apart. I hope your symptoms resolve soon. Is it possible you simply came down with the flu?
The RLS experts report that InjectaFer has the strongest published evidence for both safety and efficacy:
I wish it was a flu! I've been vomiting today (with no fever though) and a horrific headache again.
Please find some links to the class action and also a few independent reviews on Injectafer (although they had it for iron deficiency anemia and perhaps the biochemistry is quite different to a RLS patient).
Thank you for posting this very important information. I had no idea. I read through a couple of the research studies mentioned. As a bioinformatics researcher myself, It is my opinion that these studies are legitimate and are well researched. I take their conclusions very seriously. If I go in for another iron infusion, I will ask for a different formulation and will steer clear of InjectaFer.
I'm very sorry that you are going through this. I urge you to get your blood phosphate level checked right away, and seek treatment if it shows that you have the hypophosphatemia (HPP) that can result from InjectaFer treatment. Good luck, and keep us posted.
A quick update. I had my blood levels of phosphate tested and unfortunately they are far too low. The next step is a 24 hour urine test for phosphate levels. I've been having ongoing headaches, fatigue, nausea etc. I'm surprised HPP is not mentioned on any of the RLS sites.
How long did it take your phosphorus Levels to normalize. I am having this same issue after taking Injectafer. I am having bone pain and muscle weakness. Feel awful
I have always had feraheme in the past and tolerated it without any issues. I went with Injectafer this time and my phosphorus levels are very low and my liver enzymes are very elevated. Curious how long the side effects lasted for you...?
I had an Injectafer infusion on Dec. 23,2020. Started having bone pain, muscle weakness, etc a few days after. Went to ER my phosphorus levels checked and were 1.3. They gave me iv phosphorus right away. However, my levels continue to fluctuate and even at almost a month out i still have the muscle weakness and pain. Did you experience this too? If so, what did the doctors do for you and are you still experiencing symptoms. Just would love some insight on how long this will last
I’m so sorry to hear about this. It took about 6 months to a year to fully resolve. I wasn’t able to get an IV of phosphorus though here in Japan. I hope you make a speedy recovery. It’s truly awful.
My second infusion was on 10/5/2020. On 10/7 I requested for my phosphorus level to be check with what I was reading online. I already had a lot of bone and muscle pain before this. And fatigue. But it was very increased plus I was having nausea that is not usual for me. They had me come in and gave me an iv for nausea (which I don't really feel like I needed. Nausea was out of the norm, but not awful. Hematologist didn't seem much concerned about phosphorus. Also, my ALT and AST (liver numbers) were very elevated. I also have had that for like 20 years and they can't figure out why. But my liver numbers have been very elevated since/more so than their usual. They have gone down some.
It took about 5 weeks for my phosphorus level to come back in range. 2.7 which was at bottom of the range. They started by giving me 5 days of phosphorus pills. I felt sick from those and they switched me to phosphorus drink packets (prescription as well). Those also made me feel bad, but not as bad as the pills. I took those for about 5 weeks. I will say that not only did I feel bad post infusion, but the side effects of the actual taking of the phosphorus may have been just as bad. Those 5-6 weeks are such a blur. I have a chronic illness and have felt horrible for 20 years, but those 5-6 weeks were some of the worst of my life. I had nights where I was like, "Am I going to wake up in the morning?" Like i felt so bad and so mentally detached/out of it. So, I after about 6 weeks post infusion I had my usual feel better after an iron infusion (never done Injectafer in past, but have done Feraheme many, many times). I felt better for a few weeks..not all better, but better than feeling like absolute death for about 5-6 weeks. I'm not to where I was before. I'm about 3 months out from second infusion. But it also sent my ferritin way higher than expected to 500 which I'm not so sure is creating problems in and of itself.
I also (could be coincidence) had an eye floater that started within a month of infusions and has not gone away. And my vision has gotten dramatically worse. I went to eye doctor, but they can't find anything wrong on examination. It may have nothing to do with infusions, but it wouldn't surprise me.
So, in conclusion...the lowest my level went was 1.1. At last check in December a little over two months after second infusion my phosphorus level is at 3.4. I have no idea what my baseline/typical phosphorus level was prior to this as it was never tested before.
I will never take Injectafer again. I have had 7 infusions of Feraheme over the years with no problems. I will go back to that when I need iron in the future.
This is good to know. I wish I would have seen this before my infusions.
Also, I filed a report with the FDA and the manufacturer. I would suggest you do the same.
To report side effects, contact American Regent at 1-800-734-9236 or E-mail: pv@americanregent.com or Fax: 1-610-650-0170.
You may also report side effects to the FDA at 1-800-332-1088 or fda.gov/medwatch.
Clearly it is widely used. But I feel it needs pulled from the market until they can figure out why it makes a certain subset of people so sick/low phosphorus. I knew "transient" low phosphorus was a side effect, but I had no idea it would be that long or that I would reach a point where I just truly wanted to die. The elevated ALT & AST (also known side effect) could be a big contributer to my issues as well as yours.
I'll do my best to remember to update this after I get the results of my next lab drawn to let you know if phosphorus level stayed up and also where ALT and AST currently are.
Thanks so much for getting back to me. My lowest phosphorus that I know of was 1.3. I am only having labs drawn once a week so the nights I feel so bad i have no idea of what my levels are. They continue to fluctuate. My last labs showed me back up to 3.1 but i still have side effects. I would think that when you are in normal range then the side effects would go away but they haven’t. Is this your experience too?
Also, I am having weird tingling all over my body. Did you have that?
I am nauseated on and off too. It’s all so scary. My eyes feel weird as well. Maybe the muscle weakness also effects the eyes.
I am trying to get my vitamin d up. It is 23 so that could be why my phosphorus will not stabilize.
Did you take any support meds to help you with symptoms? Besides the nausea meds?
What doctors did you see? My hematologist claims he has never seen this happen before. It’s so frustrating.
My liver enzymes are normal. I am curious about my ferritin. It was a 2 before the infusion. I only had a dose of Injectafer. I felt so bad that i didn’t go back for the second dose a week later.
Did you stop the phosphorus packets after your labs that showed 3.4?
I am definitely filing a report. I have never had any major issues with my health. This has been overwhelming
Also, have them keep an eye on your potassium. I had heard that IV phosphorus can mess with your potassium levels. So you might want to check and see if your potassium is within range.
My iv's were given at my hematologist's office. My hematologist always waits until I get super low to give me an iv. So, I was so glad that she finally allowed me to get some that I hated not to get both. But when I went back for my second one I told two of the nurses and they were like no, we've not heard of that (bone pain from injectafer). And when I went into hematologist's office two days after the second infusion, the physician's assistant said they didn't think phosphorus was the issue, but still went ahead and gave me 5 days worth of phosphorus pills and told me to follow up with my primary care and have my primary care go from there. My primary care monitored things sounds much like you - on a weekly basis. I'm glad to see your phosphorus is over 3. That is a relief. I cried tears of joy when mine got over 3 just knowing I had finally gotten up to that point.
I didn't take any meds. I have chronic pain and have been to mayo clinic for a month for treatment there and they had me stay away from ibuprofen and pain killers in general as it can upregulate pain in people with already existing pain. If that wasn't the case, my goodness I would have been popping vicodin and ibuprofen those 5 weeks or so for pain management.
I'm glad you brought up vitamin D as I almost mentioned that in my last message. I too have an issue maintaining a good vitamin D level and during this it had dropped back into the 20s. Vitamin D in general causes me to feel like crap and increases my already existing bone and joint pain. But, I have to grin and bear it sometimes as I've got to keep my level up. Back before I had chronic pain, I could pop vitamin D and it would give me no side effects at all. Now (in last 10 years), I take Vitamin D and I'm in so much pain. My sister has started having the same issue.
So, possibly on top of the side effects from the infusion, you might be having vitamin D side effects even if it is not pain. My advice would be to not take it for a week and half or so and then see how you feel/if symptoms let up at all. Unfortunately this vitamin d pain side effect thing has gone on for like 10 years for me. I can't get past the hump of where it doesn't cause pain for me.
Also, I am no doctor, but I want to throw in more of my opinion...
A ferritin of 2 is very low...I hate that they let it go that low. You'll likely feel better-less fatigued once the iron levels out. Provided you weren't having lingering side effects from the infusion.
With a level that low, I would consider getting tested for Celiac even if you don't have stomach issues. You may already have. But I wonder about an absorption issue if your ferritin is that low and also a problem with vitamin D. Not that your Vitamin D is super low, but my guess is it was much lower before you start supplementing.
I don't have Celiac, but I still think I have an absorption issue. I've been obsessive about iron and vitamin d for like 10 years and work hard to maintain decent levels. Yet there are people who don't have to even think about their levels. My hematologist doesn't seem much concerned, but if I were you (if you haven't already) make sure you get a good work up done to rule out Celiac. And although hotly debated, you could still have an absorption issue not due to Celiac but being "sensitive" to gluten which could still cause an absorption issue. Like it could cause you to not absorb nutrition from food like you should. And I would venture to guess that your B12 level is probably on the lower side.
Yes, I stopped the phosphorus packets once I got around 2.8. They were making me so hazy on top of feeling like crap. I worried my level would tank after that, but they didn't. They continued to steadily go up.
Thank you so much for all of the info. I have been struggling to find anyone who understands what I am going through. I will definitely get checked for celiac. I was wondering how long does it take the body (muscle weakness, etc) to catch up once the phosphorus normalizes?
I do think you should feel better in general from the iron about about 6-8 weeks after your infusion. When I do Feraheme infusions, my mental health seems to improve somewhat in the first three weeks. And I have a little bit more get up and go at about 6-8 weeks. I think its because it takes the body many weeks to start producing red blood cells or something like that. But not sure if you were having low iron symptoms before this. But with a ferritin as low as yours, I don't know how you wouldn't have been having symptoms.
But yes, I would think you would have felt better once the phosphorus got above 3. I did...not great, but felt like living again, but that could be because around same time I came off the phosphorus packets that were also making me feel weird and off. So I think I was affected from both the low phosphorus and the side effects of the actual taking of phosphorus powder.
Here's to hoping you feel better soon! I feel still feel yuck, but its so hard to tell with me what is causing what because I have a chronic condition and already feel like crud everyday, too.
Definitely don't be afraid of Feraheme infusions if you need iron again in the future. I didn't have any side effects from those.
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