Persistent Side Effects From Injectafer (Page 6) (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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Re: Patrick (# 87)

Where was her pain? The doctor concluded it was from the Injectafer?

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Re: Ashley (# 88)

All joints. Yes the doctor believes it is a direct result of the Injectafer.

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Re: KCKC (# 8)

I had a series of Venofer 2 years ago and had no problems with it. I did space the infusions at least 7 days apart rather than 2X a week and had the nurse turn the IV drip to a slow rate- took about 45 minutes - and I took Benadryl right before the infusion bc I read it lessened reactions to these things. I have to have IV iron infusions again and my hematologist wanted to use Injectafer. I refused Injectafer and will begin Venofer next week. Always take 1 or 2 Benadryl liquid pills as soon as you arrive for Infusions!!!

Prayers and good thoughts for good results for each one of you.

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Re: dizzy girl (# 91)

I just had my first injectafer infusion 5 days. Since then I feel extreme nausea, fatigue and aches. They are treating the symptoms, but I am still not able to eat. Feel way too sick. I am refusing the second dose. I have had other iron infusions, and have never felt like this. I wish you feel better soon. I'm at a loss. I can't afford not to eat. I'm quite thin. I just hope these side effects go away and soon.

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Re: Durbs (# 2)

I am experiencing the same thing. I suffer from multiple chronic autoimmune diseases; and I usually have a lot of discomfort/pains that I’m used to and tolerate as that’s all we can do. 2 days ago on Wednesday I had my first iron infusion therapy (6hrs)... to make sure no allergic reaction. I felt extremely neaseous at times but nothing I couldn’t handle. As with severe gastroperesis and intestinal neuropathy it’s s daily problem anyway. I have had my spine and neck fused and no back pain all to well; however this “Pain/Sensation of my heart beating throughout my spine is very new and concerning as I’ve never felt this type of discomfort before”. You are the first person who’s describing it just as I would/am. It runs straight across the lumbar area (especially after standing up getting out of bed or on couch), it also radiates up and down the thoracic area too. I’m scheduled for 2 more (total of 3) then take a break to see how my body responds & if anemia improves. Did this get better for you? Or is it something that will happen every time? I always have stiff joints and muscle cramps/weakness so that I can deal with this is just really odd. Thank You again in advance for listening. Just not something anyone can relate too.

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I had an injectafer infusion a week ago and I still have severe muscle and bone pain, not able to eat, nausea, and just feel so sick. This is the worst ever. I can’t keep taking off from work. This is extreme. Dr. has no answers. I can’t afford to lose any more weight. I am thin enough...Must find some answers.

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Re: Kristeen (# 94)

I'm going on 3 weeks after my first injectafer infusion and still suffering with major muscle aches and bone pain and back and hip pain. Dr says it will go away. I'm beginning to doubt it. Nothing helps.

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Re: Shygoose (# 98)

Hi. If you aren't feeling well three weeks out, then I would agree that you should be very concerned. All of my doctors said that I would "get better in time" and so I was very passive in the beginning. It was a mistake. Six months out and I am still very sick. You need to demand that your phosphorous levels be checked (blood and possibly urine-read the entire thread here) which your doctor could easily do and then ask if they could give you anything to bring down what is obviously inflammation; for example, a prednisone pack or a medrol pack. Hematologists give steroids along with chemo all the time. It used to be traditional practice to pre-medicate iron infusions with Benadryl and steroids. I don't know why Injectafer is different. Most people do fine on this kind of iron, but for a subset of people, this stuff is toxic.

Just as an update to others who I reached out to before. I went on a 12 day prednisone pack starting at 60mg, but I did not respond at all, except for maybe a little more energy. I think it has been too long and too much damage has been done. My neurologist suspects that the iron inflamed my spinal cord and also caused damage to my peripheral nerves and so I am getting an MRI in a week and then probably IV immunoglobulin to calm my immune system down. I have small sensory nerve pain all over my body from the infusion as well as muscle twitching and jerking. I am in constant pain. It's been a complete disaster.

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From Susan 777
Had my second Venofer infusion last week with slow drip of 1 hour as per usual for me.
I take a Benadryl on way to UTMC and another when I go back for Infusion.
Big Pharma is using t

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I had my first injection of injectifir on Wednesday and felt good that afternoon then started having chest pains that evening and then head ache. I woke up with headache again Thursday and took a goodies which seemed to help then later that evening had chest pains again. has anyone else had cheat pains with injectifir? I have another round next week and wondering if the side effects will be worse.

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Re: lowfwrritin band girl (# 102)

I seem to recall having chest pains after mine in 2016. I would call your doctor ASAP though.

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Re: Ashley (# 103)

thank you Ashley. I didn't wake up with chest pains but they have been in the evenings. my headaches however are increasing. ugh which I have read alot of people get. did your infusions help raise your ferritin levels? mine was 4 to begin with.

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Re: lowferritin band girl (# 104)

My chest pains were at night too. Interesting. I have headaches often so I’m not sure if mine were normal or from the infusion. YES! My Ferritin was a 4 too and it brought it up to like 157. It is slowly going down though. It’s 52 now. I split up my infusions one month apart instead of a week. Are you getting pre meds? I would ask for saline too.

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Re: Ashley (# 105)

I am supposed to have my second one next Wednesday so a week apart. I have sent the office a message about my side effects. what did they say about yours? I haven't asked for saline since this is my first time ever doing this but I will. I don't have headaches normally. I was starting to when they found my level was low but these after infusion are way worse. thank goodness goodys work. I am sorry you have them often...i don't know how I would even be able to think. I actually feel tired today more than I did before the infusions. I think I was pushing myself and didn't know inwas actually tired but some days I could hardly move. my mom doesn't absorb iron so they aren't sure if I am like her or if maybe it is from the gastric band I had done 3 years ago

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Re: lowferritin band girl (# 106)

The doc didn’t say much other than next time we will add saline. We did steroids with my infusions to prevent any reactions. When I went to the ER with chest pains they said I had some hemoconcentration - meaning my blood was concentrated, probably from the iron. That’s why my doc said we would add saline next time. See if you can space your next infusion out longer.

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thanks Amy. I will definitely ask. I appreciate all your input

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Re: lowferritin band girl (# 108)

You’re welcome! Good luck!

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Re: Chris (# 34)

Hi there. I have had three or four different iv infusions with Venofer with NO complications. A week ago I got another infusion after not having them for over 1 1/2 years. I have severe back pain and feel like I have the flu and am scheduled for 2/5 tomorrow. Should I not go? How long does this terrible back bone pain last? I feel like I e broken my backbone. It’s horrible.

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Re: Kaki (# 14)

I have had injectafer before. This was my 5th round. I had about a year and a half break between this round and my last. I had venafer between the last and this as they wanted to try it. I had a reaction to it so back to injectafer. Anyway, this was my second dose today of this round. Premeds were just solumedrol. Well I am having an intense headache, body pain, diahria and my heart is racing. It's running around 100 to 110. I am riding it out but I am calling the doc tomorrow. My iron isn't low just my ferratin. Wondering how important that is cuz this feeling sucks.

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Re: Stacy (# 111)

The steroid premeds can make you feel like that too. Ask your doctor if the steroids may be causing it.

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