How It Feels to Have an Injectafer Iron Infusion

Today (8/25/16) I sent an e-mail to American Regent, the company that markets Injectafer in the US, with a link to the comments page. On the contact page, there is an email address for reporting Adverse Drug Events, if you would like to contact them yourself.

I have ceased having bleeding from my varices and my blood counts are normal. I am glad that I was able to tolerate Injectafer well enough to get my body the jump-start required to bring my iron reserves to normal levels.

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The usual caveats about this not be medical advice, etc. all apply to the following. My purpose in writing this post is to provide something I couldn’t find when I was scheduled for and after I had an Injectafer iron infusion last April: a personal account. There are a number of resources for studies of Injectafer’s safety and effectiveness, but that is not all I want to know.

Injectafer was approved by the FDA in July 2013, so it is fairly new. My understanding is that the older types of iron infusions are a lot more problematic, side effects were more common, and it took hours to receive the infusion. But I have no experience with that.

If you are here, you probably already know that delivering iron through an IV is an alternative when oral iron supplements haven’t worked in alleviating iron deficiency anemia.

Followers of this blog will know that, as a consequence of primary biliary cirrhosis and portal hypertension, I have had 10 gastric bleeds from burst varices and 17 transfusions since August 2010. The past (nearly) 14 months have been good ones, with only a single 2-transfusion bleed in February 2014.

However, in spite of the 2 transfusions, I continued to feel run down and fatigued. For one thing, although the normal hemoglobin range is 12 to 15 (or 11.7-15.5. or 11.3-15.2 — depending on the lab; I have results from 3 labs here), transfusions after a blood loss, which usually adds about 1 point to the score per transfusion (or so I think — again, an ordinary person’s understanding and not a hematologist’s is all you are getting here) are usually stopped once the patient gets into the 10s. One reason is that with every transfusion, the possibility of having a reaction to the next is more likely. Another is that usually the patient’s body will bring itself up to normal levels in a few weeks either through diet alone or with iron tabs.

The first of April, about 6 weeks after my 2 February transfusions, I had my labs done and my hg was 9.7. I can cope in the high 9’s, but coping is about all. Basically, being anemic means being oxygen deprived. If you want a similar experience, go hiking at sea level for a few hours, and then go above 12,000 feet and do the same. In another couple of weeks I had crept up to 10.5 on the 12 -15 scale; better, but not great. My family doctor sent me to a hematologist. My iron level  was 31; normal is 40-160. Two Injectafer infusions were scheduled for a weak apart for early May.

Hematology and oncology go together, and I know that since I don’t have cancer I should have nothing to say about this other than how grateful I am. But the truth is, it is really a sad and sobering experience to have to go to an oncology infusion center. Most people are there for chemo. Of course I knew I was the lucky one in the room, but you know, it is still depressing. In fact, I think the worst part of the whole process was when I was waiting to schedule my little infusions and the man ahead of me broke down crying at the desk. The doctor came out and said this time it wouldn’t be so bad. It didn’t help much.

Getting the infusions was quick. Each took about 20 minutes for the little bag to drain into my veins. It hurt a bit, but not badly; it’s an IV and those are rarely for me painfree. The iron looks like you might expect — brownish with a bit of red.

I thought the infusion would have immediate effects, that I would leave the building infused with energy.

It does not work that way.

Most surprising was that I actually felt worse for several days after the first infusion. I felt like I had been run over by a steamroller that had then backed up and done it again. I felt like I had reached the end of hope, that for the rest of my life I would never again have energy.

When I mentioned this to my hepatologist in September, he said he had heard this from others, so it is not just me. The thinking is that any time the body is hit with a sudden infusion of something it has never had before — like a load of iron all at once — it is going to have to process it, get used to the idea, make some internal adjustments, and that is fatiguing,

I didn’t feel much of anything after the second.

But about a week later, I  noticed that I wasn’t dragging around so forlornly.

After another week, I stopped eating ice.

A Connoisseur of Ice

I used to eat ice all the time. I mean it, all the time. In the middle of the night I would awaken to eat ice. Simply sipping water wasn’t enough; I’d have to go to the freezer for ice. I’d never leave home without at least one tall glass full. When I traveled I carried a small ice chest, full of ice. I decided I would probably not ever enjoy going to Europe again because I remembered the one time I went to the UK, 35 years ago, getting ice was hard, and I simply liked it then. I had my favorite source of ice: Sonic. One of the things that made hospital stays tolerable was that hospitals have good ice. The only thing I missed when I moved a few years ago was the crushed ice dispenser on my fridge door. I craved ice.

Then I didn’t. I still am thirsty all the time because I have Sjorgen’s syndrome which means my salivary glands are also under attack by my immune system, so my mouth is always dry, and my teeth have gone to hell, but I don’t eat ice. I drink fluids.

Eating ice is a pica — the consumption of non-nutritional substances, like chalk, soil, or sand as well as ice. Frankly, for an anemic, it seems it would make more sense to crave soil, but I’m glad it doesn’t, and of course, talking what makes more sense among things that don’t make sense is senseless itself.

But no one knows why people with anemia crave ice.

My Normal hg

On June 2 had an hg of 13.9, up from the 9.7 hg of April 2: a significant improvement, and my iron reserves zoomed from 31 to 163 at the end of August. So now I have stored iron with which to make new red blood cells. On 9/11 my hg was 13.6.

So my experience with Injectafer: excellent.

I wish I had known it would take weeks to work and I’d actually feel worse for a while after the first infusion, but now, if you are wondering what to expect, you have one report from the field.

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54 thoughts on “How It Feels to Have an Injectafer Iron Infusion

  1. Injectafer was the worst thing that ever happened to me. Two years later, I am still crippled from its devastating effects. I received Injectafer in early September 2015; one day later, I developed a high fever of 106F, increased BP and pulse, faintness, ataxia, and shortness of breath. We called my hematologist at University Cancer and Blood Center in Athens, GA, and she claimed that Injectafer could not produce these side effects and told me to see my GP. My GP prescribed chemo-strength drugs that damaged all my major organs and my gut. Since then, I have suffered FTS, EDS, POTS, IBS, GERD, CVID, CIDP, IC, UC, RA, APS, ME/CFS, MCS, candidiasis, fibromyalgia, Lyme, hypothyroidism, hyperammonemia, hypogammaglobunemia, dermatographism, endometriosis, chronic uritucaria, guillain-barre syndrome, UTIs, metabolic syndrome. My nutritional deficiencies include vitamins A, D, E, K, Beriberi, B2, Pellagra, B12, magnesium, zinc, omega-3s (DHA and EPA), carnitine, and coenzyme Q10.

  2. You really need to call your doctor. I have no idea what else to tell you, but I hope it gets better. It seems since you tolerated the first so well but the second was so hard, that maybe you reached a tipping point and are experiencing some of the same things others of us did. BUT CALL YOUR DOCTOR.

  3. I had a iron transfusion last Thursday and another on Thursday a week a part the first one was great I even went to work after it. The second one I felt really dizzy and sick and could taste that horrible iron taste.I feel like I’ve been hit by a bus my eyes hurt and my head can someone please give me some advise what to do

  4. I had my second injectafer infusion on February 15, 2017. My question is how long after do you start feeling normal again? Or will I ever feel normal again? Will I ever get my full energy back?

  5. I had my first infusion today of Injectafer. I was ok with test dose and then when they resumed about 5 min I became hypotensive and they gave me steroid and Benadryl and zofran for nausea. I then felt faint and turned white. I was super scared and it is 8 hours later and have a headache and shaky. Any advice would help

  6. I found that I get overly hungry after these latest 2 iron infusions.. I do not remember the name.. but it takes 3 hours to infuse…. (the other only took 45 minutes). I am always ravenous!! Within minutes of clearing the table… but I have lost the ice craving… I still drink lots being an ileostomate…, I appreciate your information…. I was worried why I felt so much worse after the infusions… for 3 or 4 days.. hope all is going well for you now…

  7. Third injection ever yesterday, it was the first in over a year. O e more scheduled for next week. I felt fine yesterday but did have a small drop in blood sugar. Today however, I feel like crap, low fever of 100°and feel worn out. I’ve had a headache all day and while my blood sugars are still in the normal rage, they are at the low end of that.
    Last year I ended up inpatient after the first infusion because my blood sugars dropped and had severe nausea. Trying to avoid repeating the 6 day hospital stay. Prayers are welcomed.

  8. I had my first dose of Injectafer yesterday. I did fine for the first 15 minutes, and then I got very light headed and dizzy. Everything started spinning and I felt like I was watching everything around me. My face flushed, and my bp went up to 168/97. The nurse turned off the drip and gave me a dose of Benadryl. Then I got very loopy, tired, and felt my words slurring. Apparently this was a reaction. After about 20-30 minutes things got better. I was given the rest of the dose and then monitored for 30 minutes afterword. I got a bad headache that night. I took some ibuprofen and another dose of Benadryl. I was very tired and stayed home from work the next day. I feel better today and went back to work.

  9. I had 2 rounds of Injectafer (1 week apart) and they were very easy to tolerate. The first round was simple despite taking a little longer. The second round I had very mild nausea (which could also have been from not eating before) and a headache the following day. But I consider these mild reactions compared to what it feels like to be so anemic. I haven’t noticed a giant burst in energy yet, but I’m only 3 days post my last infusion. Best of luck to those who receive this treatment. I think it’s much easier than the old infusions that took 5 or 6 hours.

  10. I didn’t have any issues with the injection of injectafer itself. It took 30 minutes folloed by about 30 minutes of saline.

    I am curious about how long it takes after injections to begin feeling better, having energy, and feeling normal?

    Also, how much elevation in ferritin is expected from two-750ml doses of injectafer?

    Thank you!

  11. Thank you, havealittletalk, for starting this blog! There is not much real life information available about injectafer. I have IDA with Hg=10.6 and ferritin=4. I had my first dose 11 days ago and the second dose 4 days ago. Since the first infusion, I have been feeling exhausted, extremely hungry, but also a bit nauseous. I also have body aches and wake up feeling exhausted. Ibuprofen does help the aches. I’m thinking the exhaustion is your body trying to get you to rest so it has more energy to make red blood cells.

    Two interesting things happened as soon as I got the first infusion. Immediately, random significant muscle twitches I had had for months, disappeared. Also, for years I had had increasingly heavy periods. The day of the infusion was also day 3 of my period which was heavy as usual. After the infusion the rest of the cycle was NORMAL!! I had forgotten what normal was like. My Dr. said this was a coincidence. I was wondering if anyone else had an experience with period flow returning to normal? I have read that low ferritin causes heavy periods thus perpetuating the low ferritin. I will see what happens in the future.

    Thank you for reading and thanks to everyone for sharing your experiences!

  12. Hi Shannon,
    Sorry to hear you were in pain. I don’t know what factors into that. My first round was issue free but when I had to repeat 6 months later I had the same issues as you and it was terrible. When I called the nurse she advised me to take pain medication an hour before my next infusion the following week. I didn’t have any pain after the next infusion but I can’t say if it was because of the meds since I didn’t have issues with previous treatments. It’s worth a try. Hope next time is better for you.

  13. Hello Everyone!
    I am so thankful to have run across this blog! I had my first Injectafer infusion this past Friday (8/19) and everything was running smoothly until last night when my back was aching so badly. It actually ached a little this weekend but nothing too much out of the ordinary. Around 3:00 a.m. my back was aching so bad I thought I was going to cry..and I have a high tolerance to pain. I took a couple extra strength Tylenol and I felt it ease up a bit.
    Fast forward to around 3:00 this afternoon and in a blink of an eye I had what felt like full blown flu symptoms! My eyes were burning so bad and I was ffffreezing along with intense body aches.
    I’m SO relieved to read about everyone else’s similar experience so thanks to all of you for sharing!
    Hopefully my 2nd infusion this Friday will go better.
    I’m not anemic but my ferritin level is 3 and I had a total hysterectomy in March of this year due to a year of nearly non-stop menstrual cycles.
    I hope everyone on here feels better soon!
    Thanks again!

  14. I’ve had 2 doses of the injecterfur. The process was easy. After my first dose I had body aches as if I was coming down with a cold. I had some pain in my right arm and leg. The nurse informed me that my body is trying to process the iron and get it to the areas where it needs to go. I still felt tired but noticed I could walk up a flight of stairs without breathing hard. I even started to dance around the store within a week of my 1st dose. The nursing for me that it will take 8 weeks for the medicine to kick in. My 2nd dose was the same…but this time I didn’t have body aches. I still feel sleepy but I have a bit more energy to take a shower or go walking. I have to steal Pace myself when I am trying to do any physical activities because I’ve been severely anemic for years! I only felt dizzy once..when I was painting the doors. My blood pressure dropped and I’ve lost 7 pounds within 2 weeks.
    So..I’ll keep everyone posted.

  15. I was reading all the replies. I had mine done at the mayo clinic yesterday. He didnt mention any side affects. I got home and had a fever and chills. I havent read anything about fevers. Thanks for your post. At least i know im not the only one who had an issue. Hoping it helps. Wondering why exactly it hurts the bones. The doctor said if the bones hurt it was a good thing. I have a muscle disease and osteoporosis. Im used to pain but this was bad. It passed and today im fine. Just wondering do i tell the doctor i had a fever. Wouod i not get the second dose?

  16. It’s helpful reading about everyone’s experiences. I’ve had iron deficiency anemia for many years – due entirely to the fact that I have been on Prilosec for severe GERD for about 15-17 years. For a long time Prilosec seemed like a safe drug, but now I’m realizing it’s not allowing me to absorb vital nutrients – not the least of which is iron. For what it’s worth, I am going to the gastroenterologist in a few days to talk about surgery. There are good options now (vs. the Nissen Fundoplication which did not have good outcomes) and since surgery is the only way I can come off the meds, I think it’s time to explore that option. But i digress!

    I had previously had several treatments with Feraheme with good results. I believe I had 4-5 sets of infusions over the years and they typically “lasted” for about 2-3 years (I am 42 years old right now). The last series I had was in 2012, and during my second infusion I had a bad reaction. My blood pressure went down to nothing and I vaguely remember the doctor and nurses running to my chair, flipping me back so my legs were higher than my head, and pumping me full of drugs to combat the reaction. I also had oxygen and was literally on the verge of being loaded to an ambulance and taken to the ER next door, but fortunately I did respond to the medicine and my blood pressure came up. It was scary, but I was actually more worried about what it would mean for me as far as future treatments. Oral meds just do not work on me. At all. Infusions are my only option, and because of the reaction, the one medicine that worked was off the table. I had bloodwork done in 2014 and it was good, but recently I’d been feeling really run-down and just awful. I avoided even the smallest sets of stairs because if I walked up them I would literally see black spots and feel like I was going to faint. I had bloodwork done at my primary care and it showed pretty severe anemia – hemoglogin was 9.4, ferritin was 4, iron was 16 (minimum should be 50) and iron saturation was 4% (minimum should be 20%)! Naturally, other stuff was off, too, because of the anemia. It was clear why I felt the way I did! I returned to my hematologist office and had to see a new doctor because my regular one (whom I loved) had moved to California. I was anxious because I thought for sure this new one would make me try oral meds first and I really wanted to address the problem quickly so I could start functioning more normally. Fortunately he is a very nice man who agreed I needed quick treatment and he told me about Injectafer, which had been approved since I had last had an infusion. He said it had lower risk of side effects and that he’d add a steroid to my pre-meds to help reduce chance of problems.

    I had the first infusion last Monday and I would be lying if I said I wasn’t anxious about the possibility of problems. They made me see the PA first, because I’d had problems before. She was nice and I apparently have the dubious honor of having “the lowest iron she’d ever seen in a patient”. As always, the nurses at that practice were amazing. I think it takes a special kind of person to be a nurse at an oncology infusion facility. They gave me the usual Benadryl, then added the steroid. We waited about an hour and then they started the iron. I kept waiting for that awful feeling you get when your blood pressure drops but it never came. The infusion was uneventful and when it was done I just had to hang around for another 45 mins to make sure I had no problems. Because of all of this, I was there about 2.5 hours total. I’ve been feeling okay since Monday – a little nausea although I’m not sure if it’s related. I go back this coming Monday for round two and am hoping it’s as uneventful as the first visit. I am looking forward to feeling good again and being able to exercise. I’m also looking forward to getting off the Prilosec so that I don’t continue to have these issues!

  17. Ashley, in answer to your question, there is no definitive answer as to why the first infusion was uneventful but the second one brought on such a severe reaction. In relating my experience to others, an individual in the medical field told me the human body sometimes reaches a limit of how much iron of this type it will tolerate before becoming allergic to it. If this is true, then I had obviously reached my limit and my body would not accept another iron infusion. I believe, however, that since I had received venofer on a regular basis for the last six years with absolutely no side effects, my reaction was an allergic reaction specific to the injectafer. During the eight days between the first and second infusion, my body might have produced antibodies against the injectafer which then attacked it during the second infusion. My doctor said there is a good probability that I am now allergic to venofer as a result of my experience with injectafer. That would leave me up the creek if it is the case. No, I have never been given any premeds before my infusions. I would advise anyone needing iron infusions to ask their doctor about venofer and stay away from injectafer.

  18. Thank you everyone for posting!!! BIG help! I have all those side effects and want to know if anyone itches like crazy. Can’t see hives but have itchy arm pits, feet, back, hands and rear end! lol

    AND I sleep with a fan inches from me!!! It’s only 80 but I’m sweaty most of the day. No it’s not hot flashes.

    Hg is 11, ferritin is 7.

    I take Prolusec bc of a hiatal hernia which keeps me iron deficient. Iron needs stomach acid to start metabolism.

  19. Cruise Control, did they give you any premeds? Did they say why you had a reaction the 2nd time and not the 1st? Sorry you had to go through that.

  20. Allow me to share my experience with injectafer.
    My background: I am a 68 year-old man who underwent a single coronary bypass which went quite well in 2014. I was diagnosed wth cirrohsis of the liver in 2010, althugh I have never used alcohol, smoked, had hepatitiis, used anything other than prescribed drugs, or any of the other usual reasons associated with acquiring cirrohisis.

    I have been looking on the Internet today for comments regarding injectofer infusions after receiving my second infusion, or rather part of it, of my first two-part treatment on July 6, 2016. This was my first treatment with this ‘new’ drug, after six years of receiving venifer two or three times a year with absolutely no side effects or problems.

    I received the first round without incident on June 29. I finished my round and went home as usual. On July 6, however, approximately five minutes after the drip was started, I felt a sharp pain in my right leg that lasted a fraction of a second. It was so intense, however, I let out an involuntary “OHHH!!”. My nurse returned and asked if I was okay and I told her it must have been a sudden muscle spasm, but I was okay. I barely got the last word out of my mouth when my body was slammed with what felt like a bolt of lightning. My entire nervous system was registering pain of the kind I had never known, I screamed uncontrollably as every muscle in my body instantly spasmed into painful cramping that was so severe my diaphram crushed me in a single spasm and would not lessen its grip. I felt myself suffocating as I tried to breathe in rapid, short breaths. There was no relief from the pain and within 15 seconds, I was hit once again with a huge jolt of pain throughout my entire body that lasted several seconds and was now centered in the small of my back. With each of these attacks, I had no control over my screaming or my body due to the cramping and the seeverity of the pain. I now suspected I was going to die. I knew I would not survive another attack of this magnitude. I did not know at the time that I was in anaphylactic shock. I tried to convey in single words to the nurses and doctors now in the room that my pain was in my spine and nervous system. Any attempt at movement was met with a tightening of the muscle cramps and more jolts of pain throughout my body. This lasted about eight minutes or so. During this time, nurses had removed the injectofer and began pushing benadryl, epinephrine and some other drugs into me to combat the anaphylactic shock brought on by the injectafer. I was fortunate that the hospital ER was located near the infusion center and they felt like they had the major seizures arrested, they moved me onto a gurney and rushed me to the ER. My infusion began at 3:30, I entered the ER at about 4:00. It was not until 7:30 that I felt like I could stand and take a full breath of air. My muscles have been sore from the cramping for days but I am thankful to be alive. I will be talking with my hematologist on Monday. I am concerned that my body’s resistence to injectafer will not now make me resistant to venifer as well.

  21. I am so glad I found your blog because I just had my second infusion with injectafer and i feel like bad. I felt this way the 1st time, so I thought the second time would be better. After the 1st infusion ii felt good after a couple of days. I had my second infusion yesterday June 21, 2016 and I am not feeling to bad, but not feeling like myself. I also feel emotional for no reason. Dont know where this is coming from. I hope I feel better.

  22. Hello again, I posted here in January. Yes, eventually I did get better:) But then the bleedings came back and as a result on Monday I am scheduled for an infusion. I will not be given InjectaFer any more. This time they will try Venofer in a dose of 200 (I had 1000 InjectaFer, way too much!). I hope this will work better.

  23. I had my first infusion on Monday. I was fine that day, woke up the next day feeling sick and having dizzy spells for the next 3 days. Has anyone else gotten dizzy spells? My nurse said it was normal but I have health anxiety so I panicked. I feel slightly better today just sort of off balance. I go for my 2nd infusion this coming Monday. Nervous about the dizzy spells.

  24. Just had my 3rd injectafer. After my first 2, my ferritin reached 51 but just 2 months later was back down to 16. My blood counts are slowly decreasing each time I go in for a CBC, except the 2 between rounds. Of course, I’m glad it is up from the 6 in September but how many rounds does it take?

  25. I had my first injectafer infusion Monday. I’ve had infed, feraheme, venofer, and now injectafer. My last infed infusion in 2013 I went into cardiac arrest after the test dose. I don’t remember that day at all. Apparently in the ambulance I went into status epilepticus and even being intubated under propofol continued to seize. I’m an RN, I’d worked all day the day before and I have 3 little girls. My life is now labeled before that day and after. I also have APS an autoimmune clotting disorder and I am post gastric bypass x 11 years. I see my hematologist when I start eating ice.
    My blood pressure got pretty high after my infusion, but otherwise it went smoothly. They always load me up on pre meds because of the reaction to infed. I always have nausea…always. My major issue since the infusion is I’m really tired and my legs hurt. I’m used to deep, large bone pain a couple weeks out. It’s how I know my bone marrow is doing what it’s supposed to. This feels more like severe flu aches. I’ve also been more tired and I’ve had a beast of a full frontal headache. My second infusion is Wednesday of next week. Looking forward to increased energy to chase my girls during summer break. Good luck to all!!

  26. I woke this morning and finally felt almost back to “normal” (as normal as one with Hashimotos, Spondlyoarthritis, Spina Bifida and a host of other fun stuff can feel, that is!). Of course that’s just in time for, round two!! Yay… It’s been a week of hell, I’d never felt so horrible.

    So now I’ve finished the second infusion. As last time, no reactions, pain, or problems during the process (besides having to be stuck 5 times, ugh). But! Within an hour after- the severe headache, blurry vision, ice pick into my ear, nausea, gassy/bloated, burning/searing pain in my belly started. About an hour after that, the near fainting spells started again (the joys of being hypotensive all the time, yay!). I fully anticipate waking tomorrow with the full on “steamrolled” feeling and DEEP bone pain to be back. And the exhaustion. Last week (first infusion) was on a Thursday. I didn’t leave my bed at ALL until Monday, and literally had to be woken to sip ginger ale and eat a few bits of something, then choke down more Zantac, Zofran, Bentyl, and a temporary boosted dose of my Dilaudid to cover the pain from these infusions (I’m on Fentanyl patches and Dilaudid PRN already for the arthritic issues and Spina Bifida, but it wasn’t touching the headache and bone pain!).

    For something that was supposed to have “fewer reactions and side effects” it sure knocks me for one hell of a ride. I figured maybe it was due to my other existing medical conditions, but apparently not! Glad I’m not crazy, or just some medical anomaly. Sorry to see so many others have suffered through too! I wish there was more honesty and info out there about these infusions. They are no joke!

  27. Thank for your post. I just got my second dose of injectafer a couple days ago and also the GI bug that same day. I feel the the bus ran over me and back a couple times. But its good to see you are not along, because people just don’t seem to believe you that you feel this way.

  28. This is so good to read! I was feeling so worried that I’m having that “feeling run over by a truck” feeling, but it’s relieving to know it’s normal. I had my first infusion a week ago and within about an hour started feeling like I could hardly keep awake. Just felt terrible and even more tired than usual. It slowly got better over a couple days. I got my second injection this morning and once again, I’m struggling to make it at work. I’m so tired, can hardly keep my eyes open, and just feel terrible. Like I have the flu almost, without the nose/throat problems. Good to know I’m not alone in this.

  29. Thanks for sharing this information. I can’t wait for the ‘run over by a truck’ feeling to subside.

  30. Hi all, I stumbled upon this post looking for reviews of Injectafer. My Hemo says I need the Injectafer infusions – my Iron is 29, Ferritin is 6, but HGB is 12.9. I did Ferrlecit in 2014 and had some reactions later – breathing issues. So I have been to scared to go forward with the Injectafer. I am really looking for some advice and some encouragement. : )

    Thanks!

  31. I am struggling after 2 injectfar. It seems to have a clear thought pattern but not much else. The injections are around 2000 dollars. I am status post gastric bypass x 7 years. The weight is trying to creep back and I don’t have the energy to get out of bed but briefly. I am not sure if it is due to the drug or because of back surgery long ago. Any way I am trying my best to get help paying for it. Guess will have to stay tuned and try to think good thoughts. Remember me and my 2 children in prayers if you will. I am a single parent with a 19 year old special needs child. Thank you.

  32. Christina, Maureen, and all who have so kindly written: I hope you are improving. Once my iron stores were replenished, it not only made a difference to how I felt then, but when I had my last gastric bleed in July, although my hg dropped 3 or 4 pts, it worked itself back into normal range without transfusions.

    I’m reminded by your tales of finally being believed of when I first had trouble with anemia back when I was having incredibly heavy periods. I guess OB/GYNs hear that all the time. Before I finally had a hysterectomy, I had a uterine ablation (scraping of the uterus walls). An hG was done during prep, and I can’t remember the numbers, but suddenly my GYN seemed a lot more anxious to get on with things.

    Anyway, I asked the anesthesiologist if being anemic could cause any problems. I’ll never forget his answer: “Most of the time I’m flying at 40.000 feet. Today, I’ll be lucky not to clip the treetops.”

    Guess dealing with usually sedated or unconscious patients was best plan for someone with bedside manner he has.

  33. Thanks so much for this post! I had been telling my doctor for 3 years that I hadn’t felt good since having my son in 2012. I had a gastric bypass in 2007 and since my surgeon moved out of the country my primary doctor was supposed to be checking all of my vitamin levels. He would send me for CBC literally once a year. Well after a surgery last year the anesthesiologist mentioned that my HGB was low and to follow up with my Pcp. He kind of brushed it off. 3 years of being so tired, lacking energy, chomping away on ice. At the beginning of this year I ended up in the hospital with pneumonia and bronchitis. While in my HGB was a 6.2. I recieved 3 bags of blood. I felt better for about a week and when I went to follow-up with the hematologist I was back down to an 8. I recieved my injectefer infusion on Monday and have been really surprised that I still am not feeling better. Thanks so much for this post, because now I have hope that it will get better. The week following your infusion were you suddenly waking up hourly through the night?

  34. Wow! Are you my twon? You described me to the T. I had my first one today. I normally have Iron auccrose, but gave recently moved from Boston to Va beach. Im use to iron and blood transfusions. .believe me but today I felt different. My hand ached as the iron was infused but figured ” hey its cool” I left the infusion and went to walmart. Approx 1 gr later, while shopping, I felt like I had been bet up. I’m achy and felt as if I could be upright any longer. I WANTED my bed! I’ve been home about an hour and feel as if I have been out all day. Now, my #s are bad my H/H is 7.0/23, my iron is 12 and iron Sats are 2%! My ferritin is 7, I know, I am.a beautiful mess..lol Oh did I tell you I am a RN, with a FT job and a part time job of eating ice (best ice is Sonic)

    Thank you for posting this, it makes me feel so much better to knowy symptoms aren’t in my head and that my nursing brain isn’t in overdrive. Good luck to you all.. feel better. #teamInjectafer. (Smile)

    Ill let you know how I feel next week, after my 2nd treatment.

    Chrissy

  35. Hello, yes, that’s about right. Six weeks… A very long time! I am still not 100% myself but I was able to go back to work, finally! Thank you for your brilliant description of your experience. It has helped a lot! Wish the doctor had said it to me…
    All the best!

  36. I believe it took me about six weeks. I remember being in despair — what if the six week point passes and I still feel this way? Am I always going to be like this? It is really tough.

  37. Hello, I received the infusion of InjectaFer on 2 Dec 2015. I was on medical leave till 5 January after that… Nausea, malaise, fainting and fatigue did not seem to leave me! I am a bit better now but still far from my pre-infusion me (even if anemic). I also wonder how long this is going to last before I see some improvement? That being said, I need to say that the blood results have improved immensely.

  38. I just had my first injection today and am scheduled for a second treatment in a week. I found this post as I was looking for ANY patient testimony I could find. This is honestly the first I’ve come across so Thank You! My Hg when last checked was a 7.1 and after reading some of the stories here I’m feeling a little less crazy. I am exhausted all of the time and I think people (including my family) don’t understand it’s more than just tired. Most days I feel like I’m walking around with the flu because my muscles especially my legs always hurt. It’s been about 5 hours since my infusion and I don’t feel any improvement but thankfully also no side effects. I’m prayerful tomorrow will be ok. I’ve gotten used to my IDA but I don’t think I can deal with worse. I had the opposite experience during my initial hematogist visit and I must say it was humbling. I sat next to an older lady (chemo patient) and she was just so filled with joy. I made a choice that day that even when I feel my worst to remember that there is always someone worse off than me.

  39. Thank you for posting! I had my first Injectafer yesterday. After eating, I did have a severe case of nausea. After getting through that, I thought I would be okay. Wake up this morning and BOOM! I can barely move and the body pain is far worse than I’ve had in the last year. I have craved more ice than before (which was not that often) and my intolerance to cold is worse. I had a nosebleed this morning and major cravings for salt tonight….I hardly eat anything with salt. How long will I feel this bad?

  40. I just received my first dose of Injectafer yesterday myself. Last year, when I developed IDA due to heavy menstrual flow, I had received five doses of 200mg Venofer, an hour each. Now, with Injectafer, we can receive 750mg of intravenous iron over the course of over just 20 minutes. Personally, I am experiencing far fewer side effects than was the case with Venofer last time. I’ve read the clinical trials detailing the safety and efficacy of Injectafer as compared with Venofer, but I was wondering if anyone knows if there is any evidence that the ferric carboxymaltose that Injectafer uses gets assimilated into the blood faster than is the case with iron sucrose in the case of Venofer?

    Sending well wishes to all,
    Nita Jain

  41. Thanks. Always ask for a copy of your lab report. It’s your blood, it’s your money — it’s YOUR report. I don’t understand a lot of what I find there — what values interacts with which, but I know an “H” and an “L” when I see them — high and low. If it is just a bit off, OK. But if it is waaayyy off, ask WHY? We know doctors order the labs because we get the needle jabs. The only way we know for sure that they READ them is to go over them with the docs.

    “Can you print a copy of my labs out for me before we get going” is NOT unreasonable.

    As for the folks who just don’t get the difference between anemia and being tired, don’t you wish we could just drop them at the top of Pike’s Peak in Colorado (14,110 ft) and let them walk home, preferably with a heavy pack and little water on a hot August day?

  42. I just had my 2nd dose of Injectafer. I had the first one March 2014.I was on a new med for my primary doctor and he ran blood work but I was eating ice like crazy and my primary doctor told me my iron was low. Low doesn’t truly tell you how low I was. I am the one who had to figure this out to get to my heme-onc doctor So it took three months to get my infusion. Why don’t doctors listen to their patients?. I am so blessed that this works so well for me. I quit eating ice and finally have energy!! I have my second dose in a week. Thank-you for this blog!!! It really helps to “talk” to fellow patients who understand me. My friends really can’t understand anemia is no laughing matter. It is a big deal when you figure out that you can get really sick with it. Your entire body needs oxygen and with anemia you are sunk!

  43. This is my second time having Injectofer for low ferritin. As far as the procedure, it was the most pleasant one I have ever had. So far after about 10 hours, I am really, really tired and I have slept a lot. My body feels pretty worn out. Before the infusion of the iron, I took 2.5 mg of Ativan, 400 mg of motrin, and 500mg of Benadryl (at the advice of the nurse). The nurse gave me about 4 hot blankets to stay warm during the treatment, and I was there for about 2 hours total, including the 30 minute follow up time in which they checked my blood pressure (it was normal, thankfully). I’ve been getting the old type of iron infusions for about 7 years. I believe these side effects of fatigue and body aches are pretty normal for 1 or 2 days after the treatment, but then I am looking forward to a lot more energy in the coming year. I can’t really tolerate 2 infusion treatments only 1 week apart because it is stressful getting prepared for these. I usually just get one and then wait a year for my ferritin level to drop and then get another one.

  44. I had my second round of injectapher yesterday 😦 my body hurts, especially my legs! This pain is about to drive me insane. I always hurt after having them done, but this time it’s worse than ever before. Is this pain normal? Am I the only one that feels like they are going to die after having an infusion done? I was given premeds to counter react the allergic reaction which steroids is one of the premeds and it’s got me on an emotional roller coaster along with my body aches snd pain.

  45. I was diagnosed in Nov 2011 with Chronic Iron deficiency anemia. Only way I even found out was after being so tired , leg cramps, short of breath etc… 6-8 months, 4 docs later ( hmm.. Lupus? MS? Lyme? Allergies? And “maybe you need to see a psychiatrist…” I found my self with a singular love affair with crushed ice. I mean like obssessed stalker kind of love affair. I knew every place in my small coastal town that had ” good” ice. Sonic, Dairy Queen, for sure hospitals cuz they have the little rabbit pellet kind. I planned my day around my habit, our freezer had a crusher and still couldn’t keep up. 7 weeks of that and I thought, uh… This is not normal, i didn’t even take ice in water before. Googled it – and there it was ” pica” sign of anemia…. So went to doc, said hey I think I can cancel that endocrinology apt at Duke. May have just diagnosed myself- I have been crunching ice like a crazed lunatic. He says no way! Iron deficiciency! Let’s order some blood work.. Soooo results came back and my hemoglobin was a 6. It cam on slowly over years and my body adjusted ( and I drank more red bull.) drove my self to the hospital as hubs was at work, walked in and the nurses are looking at me and then looking down at blood work, looking back at me, looks at each other and says ” um, why don’t you come and lie down on this gurney. ..” And who drove you here? ” now I had just gone hiking and cooked thanksgiving dinner two days before. So I’m like- I drove my self. Why? Turns out- most trauma centers/ er etc… Give blood transfusion if patient is below a 9. This was 2011. I had a blood transfusion and then about 12 weekly infusions of Venofer, which is a brand of IV iron. Infed is another and have had that as well. I had my first injectefer last year and it went fine, Had my second 1/2 gram injectefer infusion on Thursday. Have felt a bit flu like after almost every one but it goes away. Have learned a lot in the past four years and as mine is chronic I will need it for the long term. Don’t be afraid if you are new to ask questions. ( ask nurses they always tell it straight. ) for example just because the package insert for injectefer says it can by delivered( pushed) in20 minutes doesn’t mean it has to be. My nurse team starts out real slow on the drip at first and then can open it up if your doing well. ( it also helps to meditate listen to soothing music etc… While it’s going in….laura

    Ps. If it burns tell them it should not burn or hurt while going in. (A bit at first sometimes, but then no.)

  46. I just had my first infusion of injectapher yesterday. I feel like death! I thought it would be different from the other infusions I’ve had in the past, but unfortunately it’s not. I had to have ore meds with the other infusions before injectapher, they said I didn’t need them with this one cause it’s supposed to be better than the other ones I’ve had before and wouldn’t cause an allergic reaction, well they we’re wrong! I had a severe reaction and ended up having to stay 3 hours after the infusion. They gave me two large shots of benadryl and pepcid along with steroids through my iv. They have me scheduled for my 2nd infusion despite the fact I had such a bad reaction to this new drug. People don’t really understand the hell those of us with anemia go through especially when it’s severe.

  47. Jenny, if you don’t get the infusions, can you get whole blood transfusions?

    I guess you know if your Hg continues to drop, the oxygen depletion could eventually harm other organs, and I’m sure that I don’t need to tell you that living in the 8s is hell.

    I had a big bleed Feb 12. I had had a minor one around Halloween, but my iron supplies were still high enough that I rebounded quite easily.

    I had my Hg tested late January: 13.1. Then I had a very bad bleed February 12 and dropped from thereabouts to 9.1. March 3 my Hg was 8.7. My iron reserves and sat were low as well, but not as bad as yours: iron was at 28, % saturation 6, and ferritin 4. I had second infusion yesterday and only today (8-9 post 1st) have I been up for 6-7 hours.

    This time the hematologist ordered 4 infusions, and I admit I am apprehensive since I can not find any reports of having 4 Injectafer infusions in 4 weeks, but frankly I haven’t felt well enough to really dig deep.

    Obviously I need to update this blog!

    I’m surprised that the insurance companies will only cover Injectafer rather than the old-school infusions since I would have thought Injectafer more expense since it is new and brand name.

    Thanks for writing, and good luck.

  48. Thank you so much for posting your experience with Injectafer! I find it very unsettling that it is a brand new drug and as of January this year is the ONLY iron infusion approved by most insurance companies for patients with anemia who do not have kidney disease. Meanwhile, it is so new that there are very few patient reviews. This is completely absurd!! I am glad you did well with the infusions. It is good to know that it took awhile. I still haven’t decided if I am going to go through with the infusion, however my iron stores and iron sat are 1 (Hg in the 8s) so I’m not in good shape, just don’t like being forced to be infused with a new drug that initially failed FDA approval due to a a large number of deaths.

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