Persistent Side Effects From Injectafer

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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Those can be normal side effects of such infusions and, unfortunately, they don't always improve or go away. Some people end up with such symptoms for life.

You may also experience dizziness, flushing and darkening of the skin at the administration site.

Has it improve any, yet?

Why were you switched off of the others, were they no longer working?

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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 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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I had my first infusion of Injectafer 4 weeks ago and felt a little fluish and tired for about 24 hours than felt ok. One week later I went for my second infusion. Within 3 minutes I went into anaphylaxsis. It was terrifying. Couldn't breath, head in a vice, and waves of unbelievable lower back pain... Wore than labor! I'm now waiting for my hemotologist to come up with Plan B and in the meantime my levels - which had gone from 7 to 9 - are going back down again. Also I am on Remicade so they are now premedication me with Benadryl so I don't react to that as well. If you have back pain during or even days after your Injectafer dose, my understanding is that may be a sign that you are developing an allergy to the Injectafer. Please tell your infusion center and dr. before your next dose.

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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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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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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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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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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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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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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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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 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 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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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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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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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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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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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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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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Does anyone still read this? I had my second dose of injectafer last Friday, which is 4 days ago. I wasn’t feeling good after but not horrible until last night when I started having the worst shortness of breath and dizziness, and now my lower back hurts so bad, it’s almost like a horrible burning pain, I’m exhausted and just generally feel awful. Does this sound familiar to anyone? I’m always afraid of over reacting and I hate feeling like I’m bothering people but I definitely don’t feel ok. I also had to call out of work today and am thinking I won’t make it in tomorrow either and I love this job and don’t want to lose it. Any help would be appreciated. Thanks so much, and I hope everyone is feeling much better by now.

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I’ve had the worst experience.
Had my infusion on Tuesday and we are Sunday, I’m
Broken ever since. Ears are pounding, hot flashes, I feel as if my eyes are too big for my sockets, I broke out in a rash a few times and Benadryl
Seems to help for about an hour. My back hurts and my skin feel, odd, as if every nerve hurts.

I didn’t react well to Venofer not Infed. I’m not done t a second infusion and all the dr said was to go to the ER for a steroid.

I’m so sad because I am worse off today than with my low iron.

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I read all comments, last one is from 2019.
No new cases or continue issues in 2020?
Or how everyone is doing?

I got my first infusion (injectafer) on June 2019 with no issues at all. I just got another infusion yesterday, I have some leg pain today, and started googling about injectafer side effects. My main concern is about low phosphorus levels, I will ask to be checked on Monday. I have schedule another dose scheduled for Nov 5th, but now I'm not sure if I should cancel.

My hemoglobin was 8.3 with ferritin in 3%. Not sure if can be improved only with one dose, so I can cancel the one for Nov 5th

My hemo said is pretty safe to use injectafer, so maybe there is nothing going on with me, but after reading all this, I'm very concerned.

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Re: Ashley (# 194)

I had my only infusion 5/16/18. 30 min after I had a rash, hives & itching for 3 weeks. Had lower back pain rt away. 5/20/05 went to ER due to extreme head pain, numbing & tingling in my arms & legs & blurry vision. Continued w lower back pain that then moved into my legs - muscle twitching & spasm, swelling, so much pain & burning. Just felt sick & fatigued. Started to feel dizzy & slightly confused. Finally googled common side effects, read about low phosphorous symptoms & had most. That was 6/4/18. On 6/5/18 I insisted on a phosphorous blood test - level was 1.1. Range min is 2.5; coma is 1 & below. Supplemented w oral powder Phos-Nak 3x daily for 10 days. After that drank 1 coke & 4 c whole milk daily for 6 weeks. Checked my levels every 4 days. What can also help is calcitroil .25mg 1 tab daily. Be sure to have other things checked frequently too - mag, sodium & potassium. Ck your Vit B’s - full panel, K, C, E & zinc. If you haven’t had FGF-23 blood, do it fast after injection. And get a full 24-hour urine panel done

I felt bad until end of Feb. now I am left w leg issues - muscle twitching & spasm, will flash red, will swell an inch in calves, pain, burning, tightness, joint pain - in knees, calves, ankles. NEVER had leg issues before injection

I saw a ton of specialists & researched like mad trying to figure out how to heal. Research says side effects are short lasting but not for everyone. And drug not on mkt long enough to get good stats. When I first got it I had to really research to find low phosphorus listed as a common side effect. If you research it now, it pops up very easily. So the manufacturers do now understand that low phosphorus is one of five common side effects of this injection.

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Re: Marie4920 (# 191)

Yes. Have been testing every 2 days since the infusion.

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Re: celeste (# 185)

How are you doing?

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Re: Ashley (# 190)

Do you have low phosphorous as a result of the Injectafer?

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Re: Ashley (# 190)

Hi! I got one dose of Injectafer 5/16/18. 30 min after finishing I had a rash, hives and felt sick. That rash & hives lasted 3 weeks. On 5/20 I went to ER w severe head pain and tingling/numbing in my arms & legs. I continued to feel sick, severe lower back pain and then pain traveling to my legs. I insisted on a phosphate blood test on 6/5 and my phosphorous level was 1.1 - range minimum is 2.5. 1 and below is coma. I went on Phos-Nak 3x daily for 10 days, then drank 1 coke & 4 glasses whole milk daily for 5 weeks. Symptoms didn’t subside until Feb. however, I am left with calves that randomly swell an inch, are painful, burn, have muscle twitching and am sore frequently no matter what my level of activity.

A recommended treatment, along with oral Phos-Nak is prescription Vit D for leg pain.

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For those that have experience low phosphorus after Injectafer:

1. How many days later?
2. How low did it get?
3. How long did it last?
4. What did you do to correct it?

Thanks!

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Re: Gina (# 188)

I tried pulling the links through the Wayback Machine (web archive). I love that service, it keeps a record of many pages and PDFs indefinitely. Was able to find the one from the FDA, but not the other.

https:/­/­web.archive.org/­web/­20180126142119/­fda.gov/­ohrms/­dockets/­ac/­08/­briefing/­2008-4337b1-01-FDA.pdf

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