Persistent Side Effects From Injectafer (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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As a physician I am really sorry to read about all the symptoms after intravenous iron therapy. Since I am caring for a patient with similar symptoms after i.v. iron, I would suggest that you have your phosphate levels checked in your blood. Many phsicians -like myself up until recently- are unaware of the fact that some i.v. iron preparations can cause hypophosphatemia. The symptoms of hypophosphatemia include bone an muscle pain, weaknes and even bone fractures. The full blown condition is referred to as osteomalacia...

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Omg- I have had feraheme and two iron types over the past 25 years of iron def anemia from gastric bypass. My hematologist switched to injectafer for all his patients. Felt little nauseous during 45 min infusion. Then 12 hours later woken up with the worst headache of my life -with retching and diaphoretic symptoms. Rushed to the hospital with a ct scan and they said it was a reaction to the injectafer- it was terrifying- thought it was an aneurysm. I am an RN too, so I have a bit of knowledge- love this forum. Really tired of medical professionals questioning when we tell them our reactions or symptoms!

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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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More information on the actual frequency of hypophosphatemia after injectafer can be found here (see page 12):

fda.gov/ohrms/dockets/ac/08/briefing/2008-4337b1-01-FDA.pdf

The clinical consequences of hypophosphatemia include weakness, muscle and joint pain but can result in severe bone complications and kidney stones. The risk for these long term complications appears to be highest in patients who require repeated infusions. For more information see:

curehht.org/wp-content/uploads/2015/11/10.2015-Angiogenesis-HHT-Abstracts_WEB.pdf - P67 & P68

If phosphate concentrations are low after i.v. iron, I would be very interested to learn more about this neglected side effect for affected patients, because I very much hope that affected patients are rapidly treated and would like help in preventing this adverse reaction.

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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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I had been having iron infusions via venofer for the past several years without issues-felt better right away. Then this round the doc recommendedwe try injectofer and I agreed since it would only be 2 visits versus 5. Well, I have felt awful since that day-last week. exhausted, bone and muscle pain, head and neck pain and pressure. scareeee! So I declined the 2nd one FOREVER. I still feel like CRAPOLA a week or more later. I am going back to venofer. I should have read about injectafor first-I just took blind faith. The doc acts like he hasnt heard of this reaction before..I am like...srsly? Just read the internet! So, for me... injectofer has hurt me and I pray that I start to feel normal without these side effects soon. Ugh

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Hi Shannon- I had the most awful reaction to injectafer and the second dose they switched me back to feraheme. Still felt sick but not as bad- try and ask the doc!!

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I already called my doctors office and refused the second infusion with injectafor. I think this stuff is dangerous. I also found a study from the international Journal of rheumatology that discusses venofer vs. injectafor and apparently injectafor has a huge percentage increase in excessive fatigue and side effects – some of which May not go away I am depressed to hear. It has been two weeks since my first injectafor infusion and I still have significant muscle and joint pain in my legs, neck pain and headache and although my fatigue is improving – it is still not normal . I would recommend that anyone who has done just fine on venofer or other forms of iron infusion – do not change to injectafor !!!!!

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I just got my first infusion of injectafer on tuesday and have been feeling worse each day. Thursday, my lower back was throbbing and had a low level of nausea feeling and tired. Friday had the same pains/nausea but now also had achyness all over but especially in the my legs and pelvic region. Feeling feverish too. Today, day number 4 since infusion, woke up early with same joint pain and feeling warm...advil wore off during the night. Does this get better? I have second infusion this Tuesday.

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Thank you Stacey!! I am definitely going to tell my hemotologist the side effects I've experienced this week. Personally for me, body aches and flu-like symptoms are my total weak points. I can usually make myself "push through the pain" to continue my daily activities but these types of aches and pains make me feel like a little girl who wants her Mommy...and I am 51 y.o. LOL!!!

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I took injectafor last year and it was great, kept my levels up for almost a year with no side effects. I moved and started seeing another dr. His clinic uses venafer with benedryl and steriods. My previous dr didn't use these meds before infusion. I had symptoms of drowsiness and felt tired for a day but other than that ok. But my levels weren't coming up so, I asked him to consider injectafor since i had great results before. So he ordered it and last week I received my treatment along with a benadryl and steroid. I did great! No side effects other than being sleepy. Yesterday had my second treatment, did well, went shopping then yard work afterwards. But last night i woke up with severe abdominal pain, teeth chatting, uncontrollable shaking, had to put something in my mouth to keep from biting my tongue!! Horrible night!! Lasted about 45 minutes and finally went off to sleep. This morning my blood pressure is way up, pounding in my ears and a horrific headache. I don't know what happened. The only thing that was different is that i didn't take the benadryl. I didn't go to the hospital, just rode it out, but i don't think i will be taking it again!! Praying my levels will be up next week and wont have to have another treatment for a year!!

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Thank you Iron Man for your post. I went back to my physician yesterday and gave them the article from the Journal of rheumatology regarding hypophosphatemia from IV infusions and comparing two different products. I don't understand why the manufacture recommend or train or mandate it being a requirement that phosphate levels for any IV iron infusions I checked before and after infusions. That is so very dangerous for the patient. My bone pain after three weeks is starting to get slightly less but I am also taking a lot of supplements including magnesium and extra D but I don't know what else to do. Phosphorus level is now at the low end of normal . When I was at the hematologist yesterday getting venofer – I noticed later that day that I had increased muscle and bone pain when I had never noticed that before with venofer. So even though I only had one dose of injectafor three weeks prior – even the venofer gave me some increased leg pains and I suspect it's because I was already low On phosphates. I think I'm going to write a letter to the head of the medical practice because number one they should be more aware of the side effects to warn people about because the side effects last weeks and I'm not even through them yet and also phosphate level should be checked . Thank you

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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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I had mine on Friday (it's Monday) and I am suffering from bone pain. It feels like my heart is beating in my bone marrow. I have also had bouts of nausea. I hope this gets better soon--I'm so tired!

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I had my second of two doses of injectafer today. the first one seven days ago. I won't let them give me this again. both times i felt out of it the day of then during night in sleep i started getting a severe headache but was afraid to take anything because of the upset stomach. Then the chest pain and back pain began. It was so bad i got up and was not sure whether to go to hospital or ride it out. I had flu like symptoms for two days including constipation and diarrhea(is that even possible) i was actually glad for the diarrhea since it finally cleared me out. ugh! I had gastric bypass in 2003 and have had iron infusions before - never anything like this. my chest pain was all the way through my back and now migrating down.

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Omg I'm so happy to find this forum.. It lets me know I'm not crazy! If you have received injectefer please get your phosphorus levels checked! I was extremely deficient in phosphorus and injectefer is to blame.. I received my first infusion in July and second in August and in September severe body aches has begun and they haven't went away!! It feels as if I have the flu.. it goes up and down as far as the pain level but never leaves.. my legs are extremely achy and I have gotten numerous of test and doctors can't find nothing.. I truly feel it's the iron infusion that did it!

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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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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 just had a infusion three days ago .. I feel like I have the flu and so much nausea.. Also a horrible metallic taste in my mouth.. I hope to goes away soon I'm scheduled for anther one in 4 days. Hope your beginning to feel better.

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Hello Everyone!
So glad to read about your experiences with Injectafer and thanks to all of you who posted!
I had my first infusion this past Friday (8/19) and thought "Wow, That was a piece of cake!". Ha! By Sunday my back was hurtin but more of an aching feeling than anything. However, by Sunday night the deep in my bones type pain/ache nearly had me in tears. Extra Strength Tylenol and Aleve seemed to take the edge off for a short time.
Fast forward to yesterday afternoon and it seemed that within a blink of an eye I was hit with what felt like full blown flu symptoms! My eyes burned so badly, I was freezing and the body aches were nearly unbearable. The way my upper back hurt I felt like I had pneumonia!
I go for my second infusion this Friday and hope and pray that my deep body aches are gone and that I don't have to endure them again after my 2nd round.
Thanks again to everyone for posting their experiences!

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