Persistent Side Effects From Injectafer (Page 2) (Top voted first)

My first dose was given four days ago and I am still feeling nauseous, muscle pain and cold sweats. Realizing that we're all different, I'm hoping someone's experience with Injectafer is better than mine and can offer some hope that things get better. Compared to my Infed and Venofer infusions this is the worst I've felt afterwards. This is my first try at a forum. Thank you for any advice.

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I've been digging for a while trying to find information on the Injectifer and joint pain. This is one of the only references I can find on the web. Can you please share with me where you got the information the "some people have these symptoms for life". My wife is experiencing continued pain we believe from this Injectifer but the doctors all throw their hands in the air and say "We've never heard of that before". Can you please direct me to a source with more information on continued pain from this? Thank you so much!

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Oh yea...doc and nurses say they have never heard of a bad reaction! Yep.......don't listen....there are more of us than they know. Bye bye injectafor. That stuff dips dangerous.

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So i am a little over a week out from my last round of injectafer. Ive been having headaches and neck pain something horrible. I called my hematologist and asked if this was side effects of a low phosphorus level. She said she had never heard of it before and brushed it off. I made an appointment with my family dr. He was very understanding and did blood work to check phosphorus and other things. They called today and guess what?! My phosphorus level was low. Please if your having these side effects please get your levels checked

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I did ok during the infusion except I was sleepy. About an hour later I got extremely nauseated. It lasted all day, and I just had to go to bed and sleep.

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What was he solution to the low phosphorus? I am curious if I have the same and am getting labs today.

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Mine hurts in the back of my neck where it meets my skull. And my head is mostly all over but real bad forehead area

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I agree. My hematologist said that it isnt a side effect. Luckily my primary care tested anyway

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Get your phosphate level checked immediately.It can cause hypophosphatemia. Most doctors are not familiar with this so demand blood work for phosphate level. My daughter is now a case study but fully recovered.

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Re: Patrick (# 46)

Hello,
Just an update for all of you dealing with the issues from Injectafer. My wife is finally feeling normal again. This has been a 6 month process. We read a lot of research articles on the side effects of this drug and some said the time for recovery could be 120 days. I will offer this advice. My wife finally ended up with a rheumatologist who had another patient with the Injectafer reaction. The Dr. prescribed a 19 day prednisone cycle to "reset" my wife's system. It worked for her! I hope you all find some relief because she was struggling but now feels like her old self. Good luck!

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I just finished my fourth dose of injectafer for low ferritin levels, and somewhat low hgb/red blood cell counts. The side affects for me with injectafer is definitely more mild then my experience with feraheim. You're right, everyone is different, and reacts differently...but my honest opinion with having dealt with this condition for so long, and having had several iron infusions?.. is DO EVERYTHING AND ANYTHING TO ELIMINATE IRON INFUSIONS AS A FIX.

I have tried everything in reference to my horrific side affects to injectafer; brain fog and disconnect, headache, confusion, backache, all over body aches, like the flu, vision problems, nausea, hands, feet, leg numbness, AND THE WORST; An undetectable lower gi bleed that occurs each time I receive an iron infusion. I'm living in a vicious cycle, with blood loss due to the infusions, and then desperately needing restoration and to jump start my body into making healthy red blood cells on its own. This has all been such a nightmare, with no relief in sight. No Dr. Will own up to any of my symptoms, or try to understand what my body is going through.

I know that in Europe, both injectafer, and feraheim were removed from being used due to causing death in a few cases. There is only one treatment that I feel will enable me to survive this horrible situation with my health...Yesterday I saw an accupuncturist I walked out of treatment feeling completely pain free and my mind was incredibly clear!!! Please go to an accupuncturist (if you can afford to) after any iron infusion. This treatment unclogged all of the toxic metal that is not absorbed, and assists your body in effectively removing it.

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Re: Alex (# 146)

Hello Alex, I do not take anything for the pain. I have improved slightly. Lots of rubbing and stretching of my tendons have helped me to some degree. As others have mentioned, and I believe it to be true, we have HYPERPHOSPHATEMIA... Signs and symptoms of acute hyperphosphatemia result from the effects of hypocalcemia, with patients occasionally reporting symptoms such as muscle cramps, tetany, and perioral numbness or tingling. Other symptoms include bone and joint pain, pruritus, and rash.

Source: "Hyperphosphatemia Clinical Presentation: History, Physical Examination", emedicine.medscape.com. Web. Dec 15, 2017

I have an appointment with my physician in two weeks and I will seek a remedy. On first glance, it is suggested, in my internet search, that I need dialysis. I understand you are dealing with Cancer, I am sorry to hear this. I was dealing with menorrhagia, so I needed iron infusions to stay alive. I am deeply disappointed I was not informed of the possible lingering debilitating effects of Injectafer. I spoke with the hospital that gave me the Injectafer and they treated me as if they never heard anyone complain about the drug. They were absolutely no help and showed me the door. My other physician believed I needed a neuropsychiatrist. No hard feelings as she had nothing to do with my iron treatment. Lastly, a bit of bad news, my experience is the effects move around involving different parts of my body. My feet, hands, shoulder and yes a trip to the hospital for my severe chest pain, let us not forget the heart is a muscle. I am learning as I go, I thank you all for honest sharing.

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Re: Ashley (# 158)

My muscles in my legs, esp. calves, were cramping. I had deep bone pain, esp. in my lower back & lower body, brain fog, felt weak & head hurt & was kinda tingly. Generally just felt like mono. I knew enough to ask to be tested due to this chat.

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Just had my 1st injectafer infusion yesterday. Everything went good other than it taking 4 people to find a vein and being stuck 3 times. I was very sleepy and had neck pain during and after. Today i still feel crappy and neck still hurting and a bad headache. Hoping it doesnt get worse after my next one monday

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Hello I had injectafer to it's the worst thing in the world it nearly killed me I got every single side effect . I wish I can go back and not have it and just stay tired with no iron better than this . Please tell me how you are feeling now

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Phosphorus pills. Mine put me on 250 mg 3 times a day. I can tell when it wears off cause my head and neck starts hurting again

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Thanks! Where do you head and neck hurt? Mine hurt I the back and my trap muscles.

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Bless your heart. Im glad she is getting the care she needs. Mine wasnt quite as bad but im on phosphorus 3 times a day. Im also very grateful to whoever first posted about the phosporus.

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I am more than concerned now. She has been in the hospital since Monday. She is receiving phosphate infusions, phosphate pills and not sure of spelling (calcitrol) calcium with vitamin d. When she came in her parathyroid was very high. Her level goes up to 2.2 but as soon as it goes to oral drops to 1.7. In your studies anything else that was done? How long will this take to stabilize to normal level??? She is so disgusted because still admitted. Seems they don't know what to do?

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This is not unusual and I am very sorry to say that there is no effective treatment available, because the drug causes 'renal phosphate wasting' the more phosphate you give, the more phosphate will be excreted in the urine, which could then cause urolithiasis. It would be very important to know more about the underlying cause of the iron deficiency in the first place. Ongoing iron deficiency is a driver for phosphate loss via high FGF23, whose inactivation is blocked by Injectafer. Hence, it would be prudent to check urinary phosphate concentrations and get FGF23 concentrations, which is the hormone that controls phosphate in your blood. If FGF23 and urinary phosphate excretion are high, then the only theoretical treatment would be an antibody that is still under clinical development named KRN23.

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Anyone else get a BIG bruise after receiving their first treatment. Not in the injection site as listed on the side effects

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