Persistent Side Effects From Injectafer (Page 7)

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: Shygoose (# 120)

Where are you located? I’m looking for holistic or naturopath too.

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Re: Lisa (# 121)

I'm on Long Island, New York. I was told to look for one who only has a MD after his name. I looked and couldn't find one local. All of the holistic ones are not MD's..

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Re: Stacy (# 111)

I had my infusion 3 days ago and the same exact symptoms of what you posted. I am so weak and feel awful. I never get headaches. Ever. I've had a horrible one for 3 days! Have your symptoms let up at all?

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Re: Rhall (# 123)

I had 2nd a couple of weeks ago and I told them about chest pains etc and they actually increased then push time from 20 min to 30 min and that made world of difference. I only had a few days of headache and increased energy

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Don't do anymore injectefer.I mean it,After 2 months. I could hardly walk. I am fairly young and very active. I haven't been the same since. I know it was from that ! Go back to the other infusions! This injectefer is a bad drug

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Re: Korky (# 125)

After a couple of months after my 1 injecterfer infusion I still Don't feel great. I must say maybe 50% better but no change for the past 3 weeks. Walking still hurts my hips and legs badly. And still feel quite lousy. For a hemotologist to tell me to to see an alternative Doctor that does not sound good. But he explained he has no treatment for a metal lije iron infused into the body. Had no problems with ferritin...definitely no more injectafer.

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Re: Korky (# 125)

Explain what you mean by barely walk. Do you have leg pain? Balance issues? Just wondering cause my legs hurt and are weak too. What has your Dr. said?

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Re: Ashley (# 127)

I can't believe how brutal that injectafer is. Everyone seems to have had issues with it. They should take that iron off the market.

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Re: Korky (# 125)

I had Venefor Infusions 2 1/2 years ago and had zero problems. I'm scheduled for 5 again and have had 2 infusions thus far. My Hemo offered Injectafer but I reminded him how well I did with Venefor and how effective it was for me and that I wanted to stay with it. He had no problem with that. My friend was anemic and needed iron infusions. Same University Hospital where I get my infusions but she had a different Hemo who gave her Injectafer and Vitamin B12 shots to take daily (at home). She did real well with the Injectafer. No problems at all. However... Venefor has been in use for many years and I haven't seen even 1/4 as many Venefor patients on the Venefor Chat Lines compared to Injectafer. IF you need iron infusions, I would suggest you opt for Venefor. And take a Benadryl gelcap on the was to Infusion and another Benadryl when you sit down in the chair. Then take a few Benadryl everyday for several days afterward. Have nurse administer drip for at least ONE hour ...NO shorter than an hour. And wait 10 days to 2 weeks between infusions. Hope all goes well for each one of us and that we get strong and have great stamina again.

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Re: Susan 777 (# 129)

I was suppose to get a second injectafer in infusion a week after the first, but due to the the severe reactions my be No decided to hold off until January to see where my iron is. The infusion was done in 45 minutes with benadryl infused first and 4 hours later they told me to continue benadryl. Unfortunately that did not help the muscl e and bone pain, causing me to barely be able to walk from the pain.. Definitely will try venofer in January..

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Just had injectafer first time tonight asked for benadryl before infusion started. I feel off I can't explain it, I am so worried about a reaction popping up! I'm sorry you are having issues. I had to use injectafer because my insurance no longer cover Venofer:(

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Had horrible side effects the first time. 3 weeks later asked for 30 minutes drip and benedryl. Much better! Read also on here leg pain due to phosphorus levels drop extremely low due to injectafer. MADE the Er tear my levels even though they didn’t agree with me. Quoted the NIH articles found. Sure enough phosphorus levels were low. Took 2 days of phosphate pills and felt better. Get your phosphorus levels tested!!! I’m all better now after a hysterectomy;) best of luck!

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Update to my injectafer infusion in October. It seems I still have some aches and pains left. My hematologist suggested acupuncture since it made my fibromyalgia act up. So I’m still not well. All my plans and working is non existent. Not much is helping.

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I had injectafer 6 months ago with no side effects. They usually gave me benadryl with my infusions. Today, they did NOT. I chalked it up to doctor's orders. 4 hours after my first of 2 infusions, my legs hurt, chest is tight and uncomfortable. Wheezing a lot as well. I have asthma. So, I'm not sure if the respiratory issues are due to my asthma or if they are related to the infusion. Gonna try using my nebulizer to alleviate the symptoms before I panic and head to emergency room. Don't want to seem as if I'm overreacting. I have a blood disorder and have had to be transfixed many times in past. Sometimes they transuse at a hub of 8...hematologist wanted to hold off this time because I'm " not low enough " ... I need to speak up. The doctor essentially works for me. If he refuses to see what is best than maybe time for a new doctor.

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Hi there. I had my first dose of Injectofer on March 9th after almost 7 years taking Venofer. The first thing the doc did was have me sign the waiver and told me "no side effects" which is ridiculous to begin with. Within an hour of the IV I felt awful. Not trying to be gross but I had diarrhea, hot flashes, dizziness, nausea and the arm in which they gave me the IV made my bicep hurt like it was bruised. Also, and I don't know if this is related but I've also notice a dull ache in my heart or area around my heart. Naturally I'm worried now and am headed to see my primary doc tomorrow afternoon. I refused to get the 2nd dose. I'm almost 50 year old female, very healthy otherwise. Not sure if this helps but 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: Ann (# 136)

Do you have any articles to share about the injectafer being removed in Europe?

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My friend had Injectafer with no problems. I use Venofer with no side effects. Going back next Thursday for another infusion. Everyone's different. Was scheduled for 5. Took 2 and went from a 10.4 to 13.4 after 2 treatments. Decided to go have one more infusion - as my daughter moved back to hometown with my 15 month old grand Twins - So another good boost of iron will do me well. Please switch to Venofer if you're having problems with Injectafer. Take 1 Benadryl gel tab when you leave for infusion and another one when you're seated in the infusion chair. Blessings to All!

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Re: Ironman (# 38)

I am absolutely amazed with this post. I have just been released from a 4-day hospital stay in which they have continually tried bringing my phosphorous level up from being admitted to ER at a .5. My story is this:

Two and a half weeks ago I had round 2 of Injectafer (round one was the prior week). In addition, during that visit I had my monthly shot of Xgeva, which I've been on for 16 months with never an issue. I'm stage-4 nsclc -fairly stable- and also getting Keytruda. I've had mild joint pain with Keytruda but nothing unmanageable. After the Injectafer infusion my pain skyrocketed to a point of almost being invalid. My hands couldn't grip, my knuckles were froze, my knees were weak and my neck hurt as if I slept wrong. I couldn't move my neck left or right.

During last Monday's Keytruda treatment we told my oncologist I just can't do this anymore, even though it appears to be working on the cancer. They did labs as usual and that's when they noticed my .5 phosphorous level and had me admitted immediately.

The oncologist referred a kidney specialist who told me he was stumped. However, after all the labs in the hospital, the kidney specialist is saying the Xgeva is probably the cause, because my kidneys are functioning perfectly (maybe the only things that are). The oncologist is leaning towards the Injectafer as a culprit because it's the only new thing that has been added to the mix. Meanwhile, I'm sitting here thinking I don't CARE what caused it right now - just FIX IT.

I was on IV phosphorus for four days and my level eventually got to 2, but then drops again quick. They finally released me at 1.6 with an oral phosphorus rx, and I'll go back for more labs in 3 days to see if I'm holding.

What blows my mind is all this time every doctor, nurse, etc. has acted like I'm some type of enigma - they've never heard of this before. Do medical professionals not Google, for goodness sake?! I know you can't believe everything you read on the internet but Geeze Louise- the amount of information I've found on this is crazy.

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Re: Alex (# 139)

So sorry! Have you seen any other info on injectafer and phosphorus?

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