Injectafer

[Mizzapit2u]

I'm one of the few people who have had a reaction to injectafer. I've never been so fatigued in my life. If you can, please avoid this brand of iron infusions. I was switched without being told, so I couldn't do any research. I have one more iron infusion (I'm back to Feraheme) and then a week later I can have my phosphate levels tested and see about correcting them. I don't think that I can let them correct on its own. Thank you for listening.

 

[Spiky Bugger]

I'm one of the few people who have had a reaction to injectafer. I've never been so fatigued in my life. If you can, please avoid this brand of iron infusions. I was switched without being told, so I couldn't do any research. I have one more iron infusion (I'm back to Feraheme) and then a week later I can have my phosphate levels tested and see about correcting them. I don't think that I can let them correct on its own. Thank you for listening.

I’m not sure that warning folks to avoid a drug that you feel caused a reaction…a reaction that is not included on any of the sources I could find, so even if you had researched, you might not have found fatigue listed…is really helpful.

For sure, iron infusions are always a YMMV deal. At one infusion appointment…I think InFEd was the cocktail of the day…several of us watched as another patient had a WILD reaction. Especially bad, as we OG patients had just told her that it was going to be a piece of cake. But that was one person, out of many, having a known possible reaction, so our infusions continued.

Injectafer, not approved for use and marketed until 2013, has been “a gift” to me. My osteoporosis makes sitting in one position for more than a few minutes at a time quite painful. So an infusion that takes less than 20-30 minutes, is repeated a week later, and then “works” for me for well over a year is great…for me.

I hope that the Feraheme works as well for you as Injectafer does for me.

 

[Mizzapit2u]

I’m not sure that warning folks to avoid a drug that you feel caused a reaction…a reaction that is not included on any of the sources I could find, so even if you had researched, you might not have found fatigue listed…is really helpful.

For sure, iron infusions are always a YMMV deal. At one infusion appointment…I think InFEd was the cocktail of the day…several of us watched as another patient had a WILD reaction. Especially bad, as we OG patients had just told her that it was going to be a piece of cake. But that was one person, out of many, having a known possible reaction, so our infusions continued.

Injectafer, not approved for use and marketed until 2013, has been “a gift” to me. My osteoporosis makes sitting in one position for more than a few minutes at a time quite painful. So an infusion that takes less than 20-30 minutes, is repeated a week later, and then “works” for me for well over a year is great…for me.

I hope that the Feraheme works as well for you as Injectafer does for me.

I'm not the only person, there's a lawsuit against injectafer because of their failure to warn the public.

There's also studies that have been done that said if you have the sleeve you are at a greater risk for low phosphate levels after injectafer. Furthermore, someone posted about having low levels after having a iron infusion. It's not just injectafer. Most iron infusion preparations have warnings posted on their website.

I find your tone really off putting, especially considering that you couldn't have looked very much. The warning is on the injectafer website. As it's on every website of almost every IV iron preparation. I should have provided proof but I thought that the previous poster who posted about this problem was well known. For that oversight, I apologize. https://injectaferhcp.com/?utm_sour...P8fdaRw3Bdt-Iw2Cm8Wjj4ZJIzoUIOYhoCE6IQAvD_BwE

Here's another study saying how the chemicals of injectafer affect phosphate levels. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6689119/

Finally, a article on the effects of Ferric Carboxymaltose on patients who have had gastric bypass and the sleeve. https://pubmed.ncbi.nlm.nih.gov/32221822/

I used to get Infed infusions, and they worked well for me. I had no trouble sitting for the 5 hours. They also seem to "last longer" for me. I think that everyone should research what a doctor prescribes, sadly, I wasn't able to do that before my iron infusion.

 

[Spiky Bugger]

1–offputting is my happy place.

2–my daughter says that I strike apathy in the hearts of almost no one. She may be right.

3–your complaint was FATIGUE. That was what I sought.

4–I seldom research companies on their own websites; the doublespeak and hype are abundant.

5–if I had, I guess I’d have learned that all IV iron poses the same problems, so we’re back to Square One, eh?

6–there is an IGNORE feature on this website; you might find it helpful. I may try it myself.

 

[southernlady]

I used to get Infed infusions, and they worked well for me.

And I’m allergic to InFed, seriously allergic. I give my reaction so others are aware. But what works for one, may not work for others.

And as the admin, telling other people how to post is against the rules. You post, you open yourself up to however others respond.

 

[southernlady]

Injectafer side effects:
https://www.drugs.com/sfx/injectafer-side-effects.html

Less common

• Blurred vision
• confusion
• dizziness
• dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
• feeling of warmth
• headache
• nervousness
• pounding in the ears
• redness of the face, neck, arms, and occasionally, upper chest
• slow or fast heartbeat
• sweating
• unusual tiredness or weakness

Incidence not known

• Chest discomfort
• chills
• cough
• difficult or labored breathing
• difficulty swallowing
• fainting
• fast, pounding, or irregular heartbeat or pulse
• fever
• hives
• itching
• large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
• puffiness or swelling of the eyelids or around the eyes, face, lips, or tongue
• skin rash
• tightness in the chest

Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common

• Nausea

Less common

• Change in taste
• discoloration at the injection site
• loss of taste
• vomiting

Rare

• Abdominal or stomach pain
• burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings
• diarrhea
• difficulty having a bowel movement (stool)
• pain or irritation at the injection site
• sneezing

Incidence not known

• Back pain
• difficulty with moving
• hives or welts
• muscle pain or stiffness
• pain in the joints
• redness of the skin

 

[Mizzapit2u]

Injectafer side effects:
https://www.drugs.com/sfx/injectafer-side-effects.html

I wish it was merely a side effect of Injectafer. The doctor canceled my last infusion yesterday and did labs instead. My phosphorus is 1. It's severely low, and I have to take medication (which may not work due to Gerd and absorption issues), I'll most likely have to have kphos infused. My magnesium and vitamin D levels are well within normal, so it was the injectafer that lowered my phosphate. Please, please, please please be careful. Especially if you have other issues I'm still anemic, for some reason neither the injectafer nor the feraheme raised my iron enough to make me not anemic. My doctor says that it would be months before I can get another infusion. I blame myself. My old doctor retired, and I've always made sure that my doctors know that I have had wls. I didn't get a chance to meet this doctor, only her nurse.

I'm not offended by what was said, I was trying to inform the public of a issue that is becoming a problem. Especially in patients who have had the sleeve. I know people who are terrified of iron infusions because of the months of side effects (probably low phosphorus) that they suffered after the infusion. Coincidencatly, they all had the sleeve. I'm not sure if they all received injectafer. Thank you for listening, and good health to all. I'm going to try to get back to feeling normal. I have very bad muscle pain in places that I forgot had muscles.

 

[southernlady]

Low phosperous is a known side effect if one haunts FB groups. It’s well documented to have it checked After an injectafer infusion. https://www.medicalnewstoday.com/articles/drugs-injectafer-side-effects
It’s now a known side effect. But the warnings are recent, (none more recent than 2020). I had my last injectafer in 2019.

Thank you for the warning but it was kinda like crying fire in a building. It’s an appropriate warning but the delivery needed a bit of adjustment.

 

[Mizzapit2u]

I will admit that, it was a bit hyperbolic. I was surprised to know that a iron infusion can harm you. I was trying to find a Facebook support group, but I couldn't find any that wasn't for those who suffer from XLH syndrome. I don't have that. The people who I know are those who I know personally. Its not just injectafer, I found the same warning on my infusion of choice (feraheme) I just never thought something that I needed every year would cause me harm. I'm glad that I know now, and I'm very glad that other than that I'm in good health. It could be a lot worse.

 

[JackieOnLine]

healthcare should not be so complicated, it seems to me. well! we do the best we can.



ETA: Spiky Bugger has been a member here from forever and is a really wise elder. I love and respect her, and I hope you recognize what she might be able to bring to your experience here.

you should post more, why not?

Jackie

 

[JackieOnLine]

I was trying to find a Facebook support group, but I couldn't find any that wasn't for those who suffer from XLH syndrome. I don't have that.

this is what I was trying to quote in my post above. sheesh. I am old enough to consider the internet to be kind of magical. I hope you can find others who have the same issue you do.
this is the best thing the internet does: find those who can support you in what you need.

 

[MsVee]

I learn so much from this group. You really don’t know what you don’t know. I have had infusions (Venofer) but I wasn’t aware of the phosphorus side effects.

 

[southernlady]

The problem here is that many of us require iron infusions cause the side effect of not getting enough iron is deeping anemia which can lead to death.