Persistent Side Effects From Injectafer (Page 2)

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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Hello Kimberly
I had injectafer 1 month ago terrible pain in pelvic are dizzy nausea cramps in my legs itch body the list goes on and on . I wish I never had it I refused the second treatment I've always been fit and very active now I'm fatigued very bad . Please tell me if you got better with time

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Just read the responses in this thread - I will never do injectafor again...bad response like yours.

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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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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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Got my first infusion on Friday. Nurse requested the change not me. Very mad they did not just leave me on venifer which has worked for me in the past. Felt like I was running a fever all last night. Lots of pain in legs arms feet ankles and neck. Headache and nausea. I have fibro so this is just making my pain worse.hope it is not permenant. Called and told them I was not coming in for a second round. Have a feeling we will see this drug in the future on TV with people suing for damages.

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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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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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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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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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Hi all!
I think I posted in August when I had my 1st infusion of Injectafer and felt SOO terrible in the days following. All those symptoms completely passed within a week. I had my 2nd round (Injectafer) in October and luckily did not have any of the symptoms that I had been through with the first infusion. More importantly I had my lab work done last week and all of my levels are back up (ferritin, iron and hemoglobin) so hopefully I am finished!
Good luck to everyone!

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Hi That could have been side effects of the steroids. Steroid side effects are awful and you didn't get steroids with your old doctor who gave you the venofer...Something to think about. Good luck.

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Got a phosphorous test and mine is normal. So I guess that's not it.

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How long did the bone pain and joints hurt for after infusion? My daughter had the two infusions and in so much agony now two weeks later. Severe joint pain. Very concerned.

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Call her doctor. Although it can be normal. Which brand of iron?

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I just want to thank you! After my daughter received 2 infusions of injectafer iron she was miserable with muscle pain. After reading your response about phosphate levels I called doctor and insisted on getting it checked. They didn't think it was necessary but did it to probably shut me up. Well we are still in the hospital getting IV phosphate and getting her to a safe level. She was .6 in emergency room. Whoever you are I thank you from the bottom of my heart for taking your time to post this. It saved her life:)

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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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Dear Catherine,

Many thanks for your positive feedback and your time to provide a detailed description of what you had to live through! This will certainly help other patients and is equally important for physicians.

I am so sorry to read that you daughter had to suffer from such a serious reaction, but I do hope that she has recovered.

We have just published a retrospective study describing the scale of the problem. Patients affected by Injectafer-induced hypophosphatemia loose or 'waste' phosphate through the kidney, which is reflected by an inappropriately high urinary concentration of phosphate. Therefore affected patients should also get their urinary phosphate concentration tested.

Renal phosphate wasting is the reason why oral or intravenous phosphate supplementation will help only temporarily. Although only time will eventually solve the problem in most patients, attempts should be made to correct very low phosphate concentrations in order to avoid even more serious complications.

The link to our publication is: journals.plos.org/plosone/article?id=10.1371/journal.pone.0167146

As a physician scientist, I am very concerned about the fact that the medical community is slow to recognize this complex problem and hence I am very interested to learn more from patients. Only rigorous case records will help disseminating knowledge about this and assist us in finding ways to avoid this serious side effect.

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I would be more than happy to provide you with any lab work from my daughter so you can look at this from the research part. I never want anyone to not know about this as a side effect. Doctors are not educated enough about the phosphate.

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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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