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My Iron Infusions - Switching from Dextran to Venofer

Updated on September 6, 2014
photo of "Hospital Hand" by Kim McLeod used with permission.
photo of "Hospital Hand" by Kim McLeod used with permission.

My Infusions

Hi. I'm Kay. For the last ten years or so, I've been struggling with iron deficiency anemia.

When I say iron deficiency anemia, I mean that I just have no iron in my body and diets and supplements do not seem to help much. I've been undergoing infusions for more than awhile now and would like to share a bit of my own experiences in hopes that it helps somebody else with their own infusions. During my second round of infusions, I had a bad reaction to the Dextran, For the next set of infusions, my hematologist swithced me to Venofer. While I've written about my Dextran reactions, this page details my experience, so far, with the Venofer.

What is an Iron Infusion?

I know that not everybody who reads this page will be familiar with iron infusions so let me *introduce* you to the infusion process.

Once it has been determined that you are anemic, doctors may prescribe iron pills and recommend changing your eating habits. If these things don't work or cause side effects and your iron levels are dangerously low, they may then order a series of infusions.

An infusion is iron in liquid form and it is given through an IV. Each infusion may take one to three (or so) hours depending upon the type of iron and dosage. This is given in a doctor's office or hospital setting and you are monitored during the procedure.

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Which Brings Us to My Venofer Infusions:

After my severe reaction to Dextran, my doctor decided to wait until it was absolutely necessary to have another infusion. Four months later, it was necessary. I had only had one infusion during that round before I had the side effects so my ferritin never got really high. I knew it was about time. Again, I was just tired all the time.

Near the end of November, we discovered that, again, my ferritin levels were below five. I was a mite nervous about scheduling another infusion but they told me they'd switch to Venofer which is better tolerated and has far fewer side effects.

So, I suppose, like me, you are wondering, if it has fewer side effects, WHY DIDN'T THEY START WITH THAT ONE? Well, I asked that question. I was told that Venofer is more expensive and insurance companies prefer to start with the cheaper Dextran.

I was told that rather than two infusions with Dextran, I would now have five infusions (one each week) and they would be shorter in duration.

Have you had an iron infusion? (would love to hear about your experience)

See results
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Believe and Hope 1 Poster at AllPosters

My First Venofer Infusion

I was scheduled for my first Venofer infusion toward the end of November. I had been given Benadryl prior to my other infusions so I was prepared. I had my pillow and was even looking forward to a little nap. The nurse brought over my Venofer bag and I didn't see the Benadryl. I was a bit concerned because I really did not want to have another bad reaction. She assured me that she has never seen a bad reaction to Venofer and it really is better tolerated than Dextran. I'm skeptical but made sure I was sitting close to the nurse's station. Once the bag was hooked up, it took about an hour and fifteen minutes to finish. The only side effect I had at that time was a bit of itchiness around the IV site. I didn't even have the usual stomach pains that I had with the Dextran. I wasn't groggy a bit because I hadn't had Benadryl. I spent the time conversing with another gal who had had the Benedryl. She was slurring her words and really tired but we had a good conversation about our upcoming Christmas plans.

I drove myself home and for the next hour or so just felt like cleaning, so I did. Several hours later, though, I became really, really, really tired. Far more than I usually am with my anemia and I started getting the flu-like achiness. By that evening, my fever was about 100 and, after taking some Motrin, I was in bed for the night by about 7pm. For the next two days, I would feel fine and then I'd start getting a slight fever with achiness. During those times, I'd nap and wake up feeling better again. All in all, this was much easier than with the other infusions I had had.

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My Second Infusion

We had to reschedule my appointment so I ended up having my second infusion two weeks after the first. This time, I left the pillow at home and brought my laptop. Again, the only side effect that I recall having is itchiness around the IV site. Maybe it isn't the iron and just the IV? Who knows. Anyhow, the time went quickly. I was in and out within an hour and a half.

I was prepared that evening to feel fluish but never happened. I was tired. Yes, I was really tired later that afternoon but that was the only side effect. This one was by far the easier infusion I had had. Maybe my body is adjusting?

Hope
Hope

My Third Infusion

I arrived for my third infusion and, for the first time, felt no nervousness at all! The nurse hooked up my IV and I spent the next hour or so sending emails and playing Settlers of Catan on my computer. I spoke with a couple chemo patients and, again, we talked about Christmas. There was a gal next to me with an iron IV but she slept the entire time. It was clear she had the Dextran. I arrived well after her bag was started and left before it finished. She slept the entire time I was there. Again, I had a little itchiness around the IV site. About 15 minutes before the bag finished, I did start to get a headache but it wasn't too bad.

This time, when I arrived home, I had to take some Motrin for the headache and just slept for about an hour. I was really exhausted again and didn't do much all day other than take occasional naps. My headache was gone after the first nap. I was pretty tired the next day but had no other side effects. I noticed that the day after that, I had a bit more energy than usual. I think the treatments are beginning to work.

My Fourth Infusion

Had my fourth infusion yesterday. I had absolutely no side effects during the infusion at all. I'd have to say, this was the easiest infusion yet. A little tired from it and had a nice nap once I got home. The only side effect I had was when my husband dropped something that made a loud noise, my heart started racing. It took a moment before it normalized. Didn't like that but will mention it to my doctor at the next appointment.

My Fifth Infusion

By the fourth week, I started to feel much better. I had energy. My last infusion went smoothly and my ferritin made it up to the 80 range which was not as good as the Dextran (over 200 with that first round) but considering I had no ferritin just weeks prior, both the doctor and I were quite happy with that level.

Dextran vs. Venofer

my own experiences

Without a doubt, I have had far fewer side effects with the Venofer.

Some of my own side effects with Dextran that happened each time:

- exhaustion

- stomach pains

- itchiness in my arm and on my head and neck during the IV

and side effects that happened but not during every infusion:

- weight gain in the week that would follow the IV

- flu-like symptoms

- fever

- headaches (severe)

- vomiting

My side effects with Venofer that I've had each time:

- some itchiness at the site of the IV

- exhaustion (but much shorter duration than with the Dextran/Benadryl combination)

and side effects that happened but not each time:

- flu-like symptoms

- fever

- headaches (but easily taken care of with Motrin)

More Information

on Dextran vs. Venofer

If you would like to compare Dextran vs. Venofer, I invite you to check out this site:

Treato.com compares the side effects and reactions of the two among hundreds of patients:
Iron Dextran vs. Venofer.

If you'd like to see the side effects for each:

Iron Dextran Side Effects and Reviews

Venofer Side Effects and Reviews.

Just scroll down and click on each one to learn more.

Since writing this page, I've gone through a number of rounds (with five infusions each) of Venofer infusions. They are still so much easier on me. At some point, I will create another page with my most recent experiences. Are you going through this? Please feel free to leave me a message. I'd love to know whether you had Dextran, Venofer, or some other iron drug and how it worked for you. Just knowing there are others undergoing this same treatment is so helpful! I can also be reached at CariKay11@gmail.com

I'd Love To Hear From You

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      Janine Herr 6 months ago

      I just had my 3rd round of venofer. Thankfully this time they did pre-meds of Benadryl and Tylenol. During my first hour I experience high BP, rapid pulse, tight chest...anyone else experience that?

    • Cari Kay 11 profile image
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      Kay 16 months ago

      What did you end up doing for this? The Dextran definitely brought my levels up the quickest and longest but I had such a severe reaction to it, I can't do it again :(

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      Kathy Roos 18 months ago

      I've had Dextran for many years and it seemed to work very well. My energy level was very high after a week or so. Now about 2 months ago I had the Venefor (3) regiment. I really never got the energy that I had gotten with the dextran. Plus they can't seem to find a vein and it takes at least 3 try's before it works each time. I feel that I want to go back to Dextran. I'm going to ask my hemotologist when I see him in 1 month. Are there any other options with getting into the site for the infusion?

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      Iza 21 months ago

      Hello, thank you for your reply!

      Oh, I wish I knew what they had poured into my veins! I'd better go back there to ask to be sure NOT to have it again. Although to be honest, I am not planning on having another infusion. It makes me feel worse instead of better. I had my blood sample taken today, we will see what the results are like.

      In my case, I blame the periods. I am considering a hysterectomy. For now I will start some hormonal therapy to reduce the bleeding. Oh well.

      Wish all of you lots of good health for 2016!

    • Cari Kay 11 profile image
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      Kay 22 months ago

      I am so sorry you are going through this. Wonder if they gave you Dextran? That was really, really tough on me as well. You should start to feel better. It was about week or four or so when I started feeling more like myself of that one. Keep me updated!

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      Iza 22 months ago

      I have been anemic for years. On 2nd Dec I passed out at home and the ambulance took me to hospital where after running a quick blood test, they "discovered" I had anemia. And so I was give, an iron infusion (unfortunately do not know what medication it was). The infusion itself went fine bit for about three weeks after I felt total crap! Like never in my previous anemic life! I was extremely weak, nauseated, could not eat. I just stayed in bed. Awful. Week four I am a bit better, eat more, get out of the house but this is still far from my normal (even if anemic) me. I wonder how long it will take to come back to "myself"? It's been almost a month and nausea can still hit me all of a sudden. Thank you. And Happy New Year to all!

      Iza

    • Cari Kay 11 profile image
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      Kay 2 years ago

      I relate. I just had another infusion a couple weeks ago and struggled with intense fatigue for days afterward. It does take at least a few weeks for energy to return. I wish more doctors would let people know that because then they worry because they are so tired after the infusion. Hope you feel better soon.

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      ELIELI 2 years ago

      I just received my third infusion of Venofer yesterday and I feel exhausted. My doctor and nurse told tiredness shouldn't be a side effect, but I only feel like this after the infusion and it last a few days. They say I should have more energy, specially since my hemoglobing levels went up a bit. Thanks for this blog, it's scary when every one is telling you how you are supposed to feel and you know something isn't right.

    • Cari Kay 11 profile image
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      Kay 2 years ago

      That is so interesting. During one infusion, they couldn't get a vein very well in my hand and went in through my forearm. I can't remember exactly what happened but do remember pain at the site and I remember telling them at the next infusion that I didn't want them doing that ever again. I know I had more side effects and really wondered if it had to do with where they placed the IV. They told me it likely didn't but they have made sure to use my arm ever since. Glad you shared your story with me because I will continue to tell them, "Nope!" :)

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      AamsK 2 years ago

      Thx Cari K i enjoyed reading your page and wish you and the readers the best of health...I have had venofer drips on and off since my pregnancy 5 years ago.. it has always been venofer and have luckily had no real reactions,, expect this time.. i had a series of 3 drips in about a 2 week span and have felt quite exhausted ! I have never felt this exhausted in the past so it was reassurring after reading your page that is a reaction..but it is wired thou that i have never felt this tired before .. About a week ago i had my 2nd infusion and the nurse could not find a proper vein she tried both hands then decided to try the arm.. all was well till the drip was almost over then all of a sudden there was this excruciating ripping feeling through my upper arm!! i told the nurse something does not feel right and she immediately stopped and removed the IV (which was almost done anyway).. has that happened to anyone ?? My arm is still sore but there is no sign of bruising .. i wonder what happened ? Any ideas ? Would love to hear from someone ... it's been over a week and the soreness is still there ...

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      ToshaNicole 2 years ago

      So I guess that's normal? I'll let us know how the next one goes.

    • Cari Kay 11 profile image
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      Kay 2 years ago

      I hope you feel better soon. I just had an infusion last week and, oh my goodness, was so fatigued for days afterward. Let me know how the next infusion goes.

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      ToshaNicole 2 years ago

      I'm taking Venofer now. I've only had one treatment. I get my second treatment tomorrow. I feel like crap. I've had flu like symptoms, fever, headaches, exhaustion, etc... Just hope it gets better after each treatment.

    • Cari Kay 11 profile image
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      Kay 2 years ago

      Let me know how it goes! I've had so many IVs now and the hand is really the easiest.

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      Peggy 2 years ago

      I am very grateful to have found your blog since most articles are so vague about the infusion details and I have my first tomorrow. I have a couple of health issues that could make things a bit sticky, so it is good to know the staff pays attention. And I will most definitely take your tip about drinking water! I *hate* IVs in the hand!! :-)

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      karan 3 years ago

      as I hate hospitals can someone tell me how long iron infusion takes as I feeling ill today because I have to have it monday

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      nathaniel82 3 years ago

      Hello CariKay: Thank you for posting your experiences and on going experience with iron infusions. I have just started this year. Actually March of 2014, four sessions, one every second week. And now on round two, going every second week again, but for three this time. I was diagnosed as being anemic at the end of January of 2014 after ending up in the hospital with a hemoglobin count of 42 (Canadian), I was told that I was fortunate to be alive. Over the previous two months I had been treated for cold and flu. Thinking back over the months prior, I as well as my Doc thought that I was still in grieving as it had been three years at that point that my husband passed away. Do believe that there was a lot more going on now, but I am still here to talk about it and celebrate with my family.My experience thus far with these infusions, (venofer from the start), I feel great that day afterwards, go to work, and then at the end of the day am exhausted beyond anythingI have ever experienced. I am going to take the day off with the next infusion and come home to sleep. I just had one this past Wednesday and still feeling the effects. I also experience joint pain that lasts for five days and then I can get out walking again. For me the hardest part about being anemic is that my life has come to a complete halt. I am able to go out for meals with friends but have to be home by nine at the latest in order to function the next day. The other part of all of this is how cold I am all the time, except forafter an infusions. For about 48 hours I am hot, over heated. (I am 60 and went throughmenopause about 15 years ago)I am praying that we will find out what caused my anemia and consequent low iron. Thank you again for sharing your experiences which allows the rest of us going through this to know we are not alone. Blessings,Pat

    • Cari Kay 11 profile image
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      Kay 3 years ago

      @luisajames: It does take about a month to work but then I feel so much better. We've discovered that I seem to have a reaction to iron. Normally they don't give Benadryl first but, since they started, my infusions have been super easy. I'm just really tired for one day and then I feel a lot better. Please, keep us updated on your infusions

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      luisajames 3 years ago

      thank you so much for sharing your experience with venofer. I will be starting my venofer iron infusions soon and so glad to hear the side effects are not as bad for you. I hope that you keep getting better! how have you been feeling overall with the venofer treatments? do you feel less fatigue overall?

    • Johanna Eisler profile image

      Johanna Eisler 3 years ago

      Iron infusion is all new to me, but very interesting, since I know someone who has been incredibly anemic for years. I would be interested to know the ingredients in these infusions. Thank you for making your experiences available to encourage so many others.

    • Cari Kay 11 profile image
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      Kay 3 years ago

      @nbindia: No, they stay pretty much the same with the infusions. I did make my cycles worse last year by trying a very-low-calorie diet and that caused all sorts of problems.

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      nbindia 3 years ago

      @kimmijo: Did u have any change in your menstrual bleeding after iron infusion. I find a changein mine as if watever blood was restored in 2 weeks following iron iv infusion is bleeding out. I am a gasric bypass case.

    • Cari Kay 11 profile image
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      Kay 3 years ago

      @kimmijo: I am so sorry you are going through all of this. Not fun! I usually have a round of five or six infusions (one a week). When they test me a month after my last infusion, my ferritin seems to hover around 60 or so. For a few months I feel really good and then I can feel myself getting droopy. I just finished a round in April so I'm still doing good :)

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      kimmijo 3 years ago

      Thanks for putting your info online since my Drs and nurses seem to know nothing about side effects, or iron infusions in general. I am taking Venofer infusions now and am very tired afterward. I'm only taking 2 a week in a 10 infusion series this time - my Dr. would have me do 1 a day, but I just don't think anyone's body (esp mine) can take but so much a week or they might develop an allergic reaction. (I keep having to play Dr and look out for myself!) I feel overall blah and stupid. I peed a bit dark urine afterward, but this may be bc I was dehydrated. They have never told me to drink extra fluids for the IV. What rate did you take your infusions? Did they stick or stay in your system? They want to get my ferritin level way up so I have some reserves for my ongoing heavy periods (the reason for the infusions). I'm trying to get my levels up to avoid major surgery since I'm 51 and could stop anytime or get my levels up and have a hysterectomy. Unfortunately for me I was misdiagnosed with my fatigue for over a decade, when I should have had surgery to benefit from it. Anyway, how are you feeling now?

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      nbindia 3 years ago

      I had a Orofer infusion(200mg) 2 days back. no side effects except pain in my hand where they pricked . That too is going away slowly. My ferritin was 1.01 and hb level 8.0

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      jhavens2300 3 years ago

      I just finished my 1st venofer infusion, the nurse just pushed it it only took about 3 minutes, I was tired and had a headache afterwards. I have 3 more scheduled 1 per week, not sure if that is all I'll need because my ferriton is 2.2. I wish I could figure out how long it will take to get my level back to normal.

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      elisa-pener 3 years ago

      Just finished my 4th venofer infusion, one more to go before labs.I was hoping it would be a one time deal but after reading the blog looks like a forever treatment.

    • Cari Kay 11 profile image
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      Kay 3 years ago

      @new_aspirant: I have no idea about men's levels at all. I know that my ferritin levels usually reach about 60 or so after a complete round of infusions and my doctors are happy. It is when my levels dip down below 10 or are non-detectable that they send me in for a new round. I do hope you find a solution and this helps!

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      new_aspirant 3 years ago

      Hello I am male 33 years, I am hypothyroid and my Hemoglobin is good.14+ always. But recently found that Ferritin is 60 in Jan 2014 which was 65 in July 13 but ignored by my GP. Now my naturopath is concerned about it. I have depression, Fatigue, Hairloss etc and low sex drive. But my symtoms get relieved when I recently started taking Iron Supplememts. They came again once I stopped. No doctor has pointed towards low iron at all. Except when I showed interest in diagnosis. One remote doc in other country has shown interest to give Venofer 200mg weekly * 5 to start with.What are the optimal values of Ferritin in men?How many infusions I need to raise my Ferritin levels to 300 my weight is 200 pounds.

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      heather27410 3 years ago

      @Cari Kay 11: Thank I will and I have you bookmarked so I can keep updated with you and every one else here.

    • Cari Kay 11 profile image
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      Kay 3 years ago

      @heather27410: What a sweet comment! I know all too well what you are saying. Sometimes it feels so lonely when you are super anemic and you know people just can't understand how terribly exhausting it is. I'm so glad you posted and I do hope you keep us updated!

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      heather27410 3 years ago

      I just wrote up something on here and I was a new user so when I went to create my account it deleted everything I typed. I found you totally by accident, I normally do not read blogs, but I was searching the net for Iron Infusion Side Effects. And I stumbled upon your blog and it called to me and I just knew I had to read it.I had my first Hematology appointment yesterday morning and also my first Iron Infusion. I forget which Iron they gave me, it was all so much to take in, all I know is that my Ferritin a week ago to the day was 2 and on Thanksgiving Day my PCP called to let me know and that she was sending me to a Hematologist. I will give you the super short version of my story, which is extremely edited because I have a very complicated medical history background. But I have been anemic on and off for years. On and off Iron pills for years, both prescription and over the counter. It was not until the beginning of this year that things got so bad for me with my iron.So needless to say I am scared, actually terrified still, and do not even know if I want my next Infusion in 6 weeks after what happened with yesterdays. But I did want to say THANK YOU, THANK YOU, THANK YOU Cari Kay because you made me feel a little less alone in all of this. And for the past almost year that is all I felt, even with all the loving support from family and friends, they do not know what it is like going through all the pain and feeling like you are having a heart attack, or understand why you just can't get out of bed for weeks at a time.But you do and you were brave enough to make it public so others like me could find you and have hope. So again THANK YOU.

    • Cari Kay 11 profile image
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      Kay 3 years ago

      @lynette-stryker: I have had delayed reactions but usually they are within the next week after the infusion. I could see, though, how cramps could happen. In fact, thinking about it, I went through them in the last year as well but can't remember how close they were to my infusions. Might be a good idea to see what your doctor has to say. Might be some other levels are off. Hope you find some relief. Those are really just so awful!

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      lynette-stryker 3 years ago

      I finished 8 weeks of Venofer one month ago. This week I started having debilitating cramps in my calves, shins and toes. Since the infusions where the only change in my routine, I suspect them. Has anyone else had this delayed experience?

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      Kay 4 years ago

      @jbreuninger1: Make sure you discuss all the side effects with your doctor. That makes it easier when they discuss Venofer with the insurance company. I was told Venofer is a lot more expensive which is why they start with the Dextran. The Venofer is less time but you do have to go in more frequently. I hope they do find the cause soon.

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      Kay 4 years ago

      @jbreuninger1: That happens.

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      jbreuninger1 4 years ago

      @Cari Kay 11: Yes, this 2nd time with the Dextran iron I have been peeing excessively and now dark.

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      jbreuninger1 4 years ago

      @Cari Kay 11: I also live in the Atlanta area. My history is that I also have Crohn's disease and HepC. The Crohn's has destroyed my ability first to absorb B-12 which caused a different kind of anemia which didn't involve low iron levels. But then about 2 years ago I started the iron deficiency anemia problem. I went through all the tests for blood loss (I haven't had a period in 22 years so that's not it) from the intestinal track: upper endoscopy, colonoscopy and the pill cam (where you swallow a camera). Nothing. Put on iron supplements caused some nausea, but I'm a trooper believe me, Prescription iron with time release and vit C. Still no improvement - ferritin 6 then 5. Bone marrow biopsy - no iron stores, but otherwise no problems. I was told Dextran, iron, benedryl, some form of steroid (I forgot name) and Zantac. Minor side effects (still exhausted and worse flu-like for 2 days). About 6 months later the need for naps back got tested again ferritin back down to 6, hemoglobin 8.9 so another appointment with hematologist, Finally, after another 2 months I spent my 2 time doing the infusions (6 hours at office in the room with all cancer patients). Slept through several hours of this. Only symptom there was a little itching near IV, but could have been the tape. Later 99.7 degree temp, hunger then nausea, blood pressure and pulse up & blood glucose up (last two probably from the steroid) and headache. Will see what tomorrow brings. stomach hurting now. Since it appears that Venofir has less side effects and much less time, but more often maybe that's what I'll ask for next time.

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      anonymous 4 years ago

      Another thank you for these posts! i start my infusions with Venofer next week. I am super nervous of the side effects but reading your posts have calmed me a bit. I'm hoping to be lucky and not get zonked afterwards because I have a one hour presentation for a college course a couple hours after the infusion.

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      anonymous 4 years ago

      I have been anemic my entire adult life (I'm 33 now) and have been trying to get a good treatment regimen for years. The 1st hemotologist I saw didn't think that I had "adequate supplemental therapy" so he wouldn't treat me. Nevermind that every salt form of iron that I have tried has upset my GI immensely. I have a history of benign colyn polyps & stomach probs anyway. In August I got a new PCP, who insisted I see a hemotologist, so much so that they made the appt for me. I have now had 3 infusions of Venofer, with the only notable side effect being the large bruise from the 1st IV. Now they know, so they double compress the IV site when done. I'll see the doc this week before my 4th treatment to evaluate future treatment plans.I do have a question for everyone out there. Prior to the IV treatments, I hadn't had a period in over 4 years. I thought it was only because of my birth control, but 1 week to the day after my first infusion I started my period again & 1.5 weeks later it seems to be increasing (still taking my birth control too). Has anyone else experienced this? I'm wondering if now that my body has the ability to increase red blood cell production it is making up for lost time? :) I am also concerned that all my newly added iron will just "leak" back out of my body. Any insights?

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      anonymous 4 years ago

      Hi! My Ferritin level was a 5. My hematologist started me on Venofer on Monday (9/9/13). Very tired afterward. Today (Wednesday) having joint bone pain. Want it to know if anyone has experience this? Also very irritable. I need 3 more infusion. Thank you so much for your blog, it has been so helpful.

    • Cari Kay 11 profile image
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      Kay 4 years ago

      @anonymous: It is interesting how ice cravings leave so suddenly after the first infusion. I hope you get great results at this next checkup. While the side effects are not always fun, it does seem worth it once you get your energy back!

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      anonymous 4 years ago

      Hi there, I'm from Los Angeles. I just had my last of 5 Venofer infusions last wednesday. I'm severly anemic due to very heavy periods. Anyway, the first side effect was, no ice chewing. the second 5 pounds weight gain, which I hope is temporary. The feeling of my body feeling spongy. my veins in my body hurt for a few days, felt punky, and just out of it. Now, I'm feeling a bit clearer in my head. My body hasn't quite caught up yet. going in for a follow up blood test next week to see if it works. goal is to have a hysterectomy and never have another period.

    • Cari Kay 11 profile image
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      Kay 4 years ago

      @anonymous: I am so sorry to hear you are going through so much. Yes, there may be side effects but plenty of people have said their infusions went smoothly. You may be one of those people. I have to say, though, even with side effects, I am so thankful for these infusions. It is just so nice to have energy again! God bless you too!

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      anonymous 4 years ago

      I live in Atlanta, Georgia and was diagnosed last week with iron-deficiency anemia. I also have HIV. I am currently taking Integral but it is bothering my stomach. My doctor has mentioned IV iron infusions, but I am terrified to take it due to some of the side effects. My ferritin level is six, so I know I need this. I have been having severe fatigue and weakness and I am sick and tired of being sick and tired. Any help and personal experiences with IV iron would be incredibly helpful. Thank you and God bless!

    • Cari Kay 11 profile image
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      Kay 4 years ago

      @anonymous: So Venofer is not covered? That would get expensive quickly. I know I had the stomach cramps with the Dextran as well but not with the Venofer. I think, as the anemia recedes, you'll find a lot of things improve :)

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      anonymous 4 years ago

      I live in British Columbia, Canada and have had iron deficient anemia for several years, undiagnosed until 4 years ago. I have had several transfusions but the criteria has changed owing to shortages of blood. I have never been able to tolerate iron orally (severe stomach cramps) so tried Venofer. It worked well, but cost ($102.00 per infusion) and is not covered by either our Provincial health plan or my private extended health. 3 weeks ago we tried Iron Dextran and I have had severe cramps ever since. I was given 650 mg Tylenol and 50 mg Benadryl before the IV so was very sleepy for the procedure but was never cold. Another side effect has been that my skin on face has become oily - have never had this problem before - anyone else? On the plus side my feet are not as cold and bowels are improving. I would love to hear any suggestions.This is so great to be able to reach out to other folks in the same situation - thanks.

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      Kay 4 years ago

      @anonymous: I've found that I'm used to them now. Just blow out when they stick you. I very rarely feel it that way. How are your infusions going?

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      Kay 4 years ago

      @anonymous: I hope your colonoscopy goes smoothly and they don't find anything! Please, update when you get a chance.

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      Kay 4 years ago

      @anonymous: How are your infusions going?

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      Kay 4 years ago

      @anonymous: Interesting about the port. I know I drink a ton of water otherwise the sticks are difficult. I had that itchiness with the Dextran and then had a bad reaction during my third round. I think it is important to find an 'easy' iron. There are a number of them. Hopefully you get one that really works for you next time!

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      Kay 4 years ago

      @anonymous: With the Venofer, my ferritin doesn't seem to go over 100. Right now we've been scheduling them when they fall below 10 . I'm so sorry this isn't working as well for you now. What about anew type of iron? My doctor always reassures me and tells me that if one doesn't work, there are plenty of other ones!

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      Kay 4 years ago

      @anonymous: How did it go? I usually bring a sweatshirt and ask for two blankets. I've found that one is not enough. Oh, and, yes, this last time, I did notice my urine was dark for about a day after some of the infusions. It didn't last long though.

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      Kay 4 years ago

      @anonymous: Hi Mare. I hope you do well too! Please give an update. Just remember, it often takes about four weeks or so to feel like your old self!

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      anonymous 4 years ago

      I'm so glad I found this site. Thanks Kay. My Endoscopy Dr. Told my husband and I that he felt I would benefit from iron infusion. I asked if I could die and he said...you can walk out the door and get hit by a car. True...I live in Canada. My first post was today. I've been on iron for 2 yrs "Proferrin" 3 tabs daily. It was awful. I stopped taking it. I'm scared but I have no other options. I hope I will do well. Thank-you for your story and and all that you've been through. I know I appreciate it very much.Mare

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      anonymous 4 years ago

      Thanks for sharing, I am getting treatment on Friday (8/2) and have no idea what to expect. The doctor really didn't give me much information except the appointment. I have also read in other posts of urinating brown afterward, did you have this? I am always cold, did you dress warm for the treatment or were you comfortable at room temperature?

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      anonymous 4 years ago

      I have been getting infusions of Infed for 4 years now. I have something called AVM in my lower GI tract out of reach of laser surgery. It is a slow bleed but not constant. So when it bleeds my hgb and ferritin drops and usually very quickly. I get my blood checked every 4 weeks and get infusions when the numbers start going down to prevent the total crash you can feel with anemia. The heart palpitations and breathing problems are now my first symptoms I can feel when my numbers start dropping. I am now 57 though and have been told that I will have to do this for the rest of my life. I have noticed that although I have the same type side effects that you have mentioned I never quite get to that point where I feel energetic anymore or I can't wait until my hgb drops to 8 or my ferritin drops to 5 or 6 for an infusion. My hematologist started scheduling an infusion when my ferritin got below 50 and now my symptoms start at even higher numbers and to prevent the cardiac symptoms he is going to start infusion when my ferritin gets below 100. I wondered if any of your readers are experiencing this type of situation? My infusions are now averaging about every 3 to 4 months although I have had them as few as 6 and 8 weeks apart in the past. It all depends on how frequently this internal bleed happens. It just seems as time goes by, I don't bounce back like I used to.

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      anonymous 4 years ago

      My first 2 rounds were Venefor with no pre-treament meds.During the 2nd round we had to cut it short when my skin got bright red and itchy everwhere even my feet and head and such.Round 3 was Venofor, but with Benedryll pre-treatment.Then I changed hematologists because mine was not kind and didnt make time to talk to me EVER she always sent her PA instead.My new hematologist wanted to try Dex with pretreatment of Benedryll and Steroids.First round went fine.Second round got cut short after only 20% in because of the itching despite an extra dose of steroids and slowing down the infusion.So now im waiting to hear on what protocol we are going to use next time, and how soon that will have to be.OH... the other thing... if any of you regular IV Iron peeps are on a monthly or more frequent schedule like me.... and your veins are starting to hate you for it....My hematologist had me get a port.. just like folks going throguh chemo get.And its AWESOME. One stick, always works first time! so much less painful than multiple sticks or the kind of sticks where they are determined to make it work and go digging in your arm, etc.Having a port put in is a minor outpatient surgery, and Im SO glad!

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      anonymous 4 years ago

      I start Venofer on Tuesday and am a little nervous. Your article has helped me to be more hopeful about the outcome. I've been crazy anemic for years and look forward to more energy.

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      anonymous 4 years ago

      My gastrointerologist is sending me to a hemotologist for IV iron......I've had an iron level between 8-9 for several months and even though I've been taking 200mg of oral iron a day, it's not improving. Also, I just had a bout of acute diverticulitis.....colon cancer is prevalent in my family so he's also scheduled me for a colonoscopy. I'm not looking forward to any of this.....my husband died of cancer three years ago and I'm being treated at the same hospital he died in. None of this feels right.

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      anonymous 4 years ago

      Start iv treatment today not sure which one they said it should take 30-45 mins..kinda scared... I hate getting Iv's

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      Kay 4 years ago

      @anonymous: I've never talked to anybody who felt they had tons of energy the next day. Usually you either feel pretty much the same or exhausted. It takes weeks to kick in. I hope yours is going smoothly.

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      Kay 4 years ago

      @anonymous: How did it go?

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      Kay 4 years ago

      @anonymous: How did it go?

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      Kay 4 years ago

      @anonymous: Wow, fifteen weeks. What type of iron are they using? I had that problem with my veins this last time but the gal inserting the IV was fairly new. Still, not a lot of fun!

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      Kay 4 years ago

      @anonymous: I hope it went smoothly. I learned something new with your post as well. I didn't realize that the duodenum was the only organ to absorb oral iron. I have to go read about that now. Thank you.

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      Kay 4 years ago

      @anonymous: How did your infusion go? Give it time. It'll kick in and you'll be ready to start training for that 5k!

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      Kay 4 years ago

      @anonymous: I so agree with what you say about the nurses. They have been wonderful for me as well! Funny that you are so hungry after the Venofer. I was that way after the Dextran. I was craving big burgers and that is so unlike me. Please, let me know what you find out from the GI doctor. They think it is the hiatal hernia causing mine but we're stopping my period for a few months to absolutely rule out that cause. Thank you for leaving a comment.

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      Kay 4 years ago

      @anonymous: I would love to hear some experiences too.

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      Kay 4 years ago

      @anonymous: I hope the liquid iron helps. I've never tried that one. I can tell you though, when we moved across the country, I felt like my new doctor started from square one too. It wasted a lot of time. Seeing a hematologist was the best thing I ever did. I finally had a way to 'fix' this. I hope you update.

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      Kay 4 years ago

      @anonymous: I hope the liquid iron helps. I've never tried that one. I can tell you though, when we moved across the country, I felt like my new doctor started from square one too. It wasted a lot of time. Seeing a hematologist was the best thing I ever did. I finally had a way to 'fix' this. I hope you update.

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      Kay 4 years ago

      @anonymous: It's natural to be nervous. Many people go through this with very few side effects or none at all. I hope you update and let us know how it goes.

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      Kay 4 years ago

      @anonymous: It's natural to be nervous. Many people go through this with very few side effects or none at all. I hope you update and let us know how it goes.

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      anonymous 4 years ago

      Thank you for sharing your experience! I have been anemic for my entire adult life and memories show that I was probably anemic as a child. I've been taking iron supplements for steadily for about 11 years. I now have a doctor who suggested we check my iron levels while taking my iron supplements...why my previous doctor never suggested that I'll never know. My new doctor called today to say my ferratin level is 5 and it's time to see a hematologist about IV iron therapy. I had never heard of this, when I did a search I found your blog. I am very scared and at the same time thankful for all the info that you have shared.

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      anonymous 4 years ago

      Hi! Just wanted to thank you for sharing your experiences. I found that I was iron deficient about ten years ago. It wasn't very bad then, and a round of iron pills took care of it. I was also 25 and didn't take it very seriously. Now ten years, three children and several doctors later (we have moved cross-country several times and like you stated, I'm always starting from the beginning with each new doc!) I seem to be having a real problem and realize that I need to take the time to address the issue. My ferritin is down to six and I have been feeling terribly tired, chewing ice like a maniac, and am experiencing shortness of breath and the occasional flutter in the chest. My iron pills just shred my stomach and leave me feeling unable to care for my three young children. My new doctor just put me on a three month regimen of "Spatone Pur Absorb Iron" which is a liquid supplement I found that doesn't make my stomach feel so awful- not sure if it will be effective or not. If that doesn't increase my levels, he said he may recommend these iron transfusions. I appreciate hearing about your experiences with the transfusions and the different varieties- I like to be informed about my options and possible side effects, so your information will be very useful when making my decisions about iron transfusion, if I require that next level of treatment. Thanks again and I wish you the very best!

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      anonymous 4 years ago

      Anyone here ever been treated in Greece?

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      anonymous 4 years ago

      I'm having two shots of Feraheme soon. Anyone with experience with this newer drug? It sounds much easier (a minute or two of infusion, then an observation period of 30-60 minutes) and has less side effects or bad reactions.Thanks~

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      anonymous 4 years ago

      I must tell you that your site and your site alone truly shows what to expect with iron infusions. I wish I had read this during my first round a year ago. My hemoglobin dropped back to 9 and I knew exactly that this was the problem. Once I started craving ice, I called my hematologist. I am starting my first of 5 infusions on Monday and have never had a bad reaction with Venofer. I must admit that I am starving after it and for the first couple of weeks after the infusion I sleep. After the 3rd week, I am feeling back to normal. This time around, I am now seeing a GI Doctor to rule out any internal bleeding - very important if there is no explanation to why this is happening. I want to truly thank you for starting this site and giving all of us real and actual feedback. I also want to add, never be afraid to ask the nurse helping you - they are so helpful and answer any questions to relieve anyone's anxiety.

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      anonymous 4 years ago

      I am getting my first Venofer infusion next week. My ferritin is less than 3 and my hemoglobin is 8 (it has been lower). My iron binding capacity was unable to be measured. I have been on oral supplements for 4 years but because they upset my stomach I tend to skip them if I have to be anywhere (work, kid's activities, vacation) - so that was not working for me anymore! My heart races all the time, and I had to scale back on my activity level, which is so depressing for me. I'm nervous about the infusion, but I'm tired of being tired. I want to run a 5K with my girls - something that, no matter how I pushed myself, I could not get fit enough for .Thank you for posting your experiences. I feel better knowing what to expect.

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      anonymous 4 years ago

      Hello, I am very grateful to have found your site. My husband has had a Whipple procedure which removes the duodenum (the only organ in the body that absorbs oral iron). His iron has been low for some time but since the hemoglobin was satisfactory, nothing was done for the iron. Recently he had a bleeding ulcer and I asked that they check the iron. It was 38 (normal for the test he had is 58-150) and the hospitalist recommended iron infusions.I had read the comparative resources on both Dextran and Venofer. His doctor had ordered Dextran but the hospitalist's description matched Venofer. So I called the infusion pharmacist who assured me that Dextran works fine for most people and you only need one infusion. He will be starting soon, and I know that I will feel so much better prepared after reading your information. Hopefully he won't need as frequent infusions as the women in your discussions,. but if so we will know better how to manage and what to expect!!Thanks so much

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      anonymous 4 years ago

      I start the first of fifteen weeks of infusions tomorrow morning. I am so tired that I'll forget to eat unless my daughter calls to remind me. I do only the barest of household chores because anything else causes my heart to race and my cardiologist frowns upon that. I had iron last about a year and a half ago, but it was only six units. This time I'll be receiving thirty units in fifteen visits. I'm crossing my fingers for no reactions. The last time I was already in the hospital so I was constantly monitored and had no problems other than my veins blowing from the iron going in too quickly.

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      anonymous 4 years ago

      I am having my first iron infusion tomorrow afternoon. I am hoping for no side effects as I have to go back to work afterwards and work th rest of the week. Your story has been very helpful, thank you for posting it.

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      anonymous 4 years ago

      Thanks for writing about your experiences. I just got a call from my Dr that I will need to get iron infusions. I knew my iron was low but did not realize it was that low. it will be interesting to see how I react to the infusion. My friend has had them and always said that the next day she had tons of energy.

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      Kay 4 years ago

      @anonymous: I hope everything goes smoothly! I think it is important for people to also know that just because one iron may leave them with side effects, another might work well for them. Venofer works so much better for me than the Dextran. I did get fevers after each infusion this round but it was still so much easier that I don't want to switch. Hope you are feeling like your old self soon!

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      anonymous 4 years ago

      I just started on Venofer infusions yesterday (Monday 5/20). So far, so good! When I was told I have "ridiculously low iron levels" (their words, not mine!) I wasn't given much information other than I needed to schedule these infusions. I wasn't given any info to prepare! So, what do we do in this age of technology? Search the interwebz! Very bad idea!! It fills your head with all the negatives and very few of the positives! In all my time researching, I never came across your site...now, I'm getting ready to call in the order for my 2nd infusion, and thought I'd see if there was info on what to expect for the next round. Your site is very helpful, and I really like that both positive and negative experiences have been shared! I think it's really important for folks to know what to expect from both side of the fence...not just the horror stories of bad side effects, allergic reactions, etc. (not discounting those issues at all - as a patient, I feel it's our responsibility to know what to expect so we can alert our medical professionals to any troubles we might have.)I also think it's important to have a realistic expectation of treatment - getting your iron levels up is not an overnight process!! The nurses all told me it may take as little as a couple weeks, or as long as a month to notice an improvement in energy levels, etc. Be patient, and give your body time to respond!Thanks again for the helpful info!!

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      Kay 4 years ago

      @anonymous: Are you getting Benedryl as well? I know when they were putting that in my IV, I was just exhausted for days afterward.

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      anonymous 4 years ago

      I have been getting venofer for over a year Now. Every time I have a treatment ,I'm so tired afterwards. Only felt ill 1x. I think it was injected too quickly. My hemo was at a 7 a yr ago. I'm now at 9. It seems like a slow process.

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      Kay 4 years ago

      @anonymous: I've been going through a round of infusions myself and got quite behind on messages here. How did your infusion go?

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      Kay 4 years ago

      @anonymous: I've been going through a round of infusions myself and got quite behind on messages here. How did your infusion go?

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      Kay 4 years ago

      @anonymous: I can imagine that being pregnant makes these a bit more difficult. I am so sorry you are going through all of this and hope that it gets easier for you. (((hugs)))

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      anonymous 4 years ago

      I've had 4 iron infusions with Venofer now and was definitely tired once I got home after each one. My iron was a 3, RBC 2, Hemaglobin 9 and Hematocrit 23 when I was put on iron infusions. I am pregnant and spent nearly the first half of my pregnancy on Zofran just to be able to tolerate food and keep from being so sick. This has been my third and hardest pregnancy. I was anemic with my first child but oral iron supplements did the trick, not anemic with my second 20 mos later and now quite anemic with this one. I never tried any other iron infusions but the Venofer but aside from the overwhelming need to nap a few hours later I felt fine and was fine the next day. I am going weekly for infusions until my counts get back up...which unfortunately they aren't really doing at this point (small jump and then back down again). They will do another iron study the next time I go in to find out if I am building up stored iron or if my body is just not absorbing the iron.

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      anonymous 4 years ago

      Thank you for all the helpful info! I go in next week Friday for my first iron infusion. 6 months of slow fe iron 3 times a day and ferritin is still at 3 and HGB is still dropping.

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      Kay 4 years ago

      @anonymous: I've talked to women who had infusions while pregnant. So glad you have not had any side effects. Please, keep us updated on you!

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      anonymous 4 years ago

      I finally went to see a hematologist who brought up all my labs from 2003 to now. It was amazing to see my iron levels slowly declining (heavy periods and 3 csections) I thought I was just tired because I had 3 boys to chase around and I'm pregnant with my 4th!!I just had my 3rd infusion yesterday (Venofer 100mg) thankfully I haven't had any side effects! If I have I've just chalked it up to the first trimester of pregnancy. Has anyone else had any infusions while pregnant? (My OB and Hematoligist are both aware but at first acted very weary of giving me infusions.)

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      Kay 4 years ago

      @anonymous: Try not to worry. With anemia, these infusions are very much worth it. Yes, I have had that awful taste thing going on too. They should have some hard candies there and that helps. If not, bring your own. It does seem to take me about a month to feel its effects. Hang in there!

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      anonymous 4 years ago

      Hi.. Was hospitalized with shortness of breath, couldn't even walk up stairs, racing heart, aniexty, found out I had zero levels of iron. in the hospital.. I got a three hour bag of venofer..I only experienced a bad taste in my mouth. I then have to get at least a fusion every week for at least 4 weeks.. got one last week, I was very nervous, got the bad taste in mouth and my stomach bothered me but I think it was more nerves then anything.. but the next day, I felt like I had to much caffeine ..and body aches..i am going for another fusion tomorrow morning and I am hoping I will feel better but I did the worst thing and researched the internet and now I am worried.. did you feel like you had to keepo streaching your arms.. I am 39 yrs old, have 2 kids , have celiac disease but I was hoping I would be having more energy but actually am more exhausted.. any advise will help

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      Kay 4 years ago

      @anonymous: How are you doing now?

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      Kay 4 years ago

      @anonymous: I know :( Hope you are feeling better soon!

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      Sherry Venegas 4 years ago from La Verne, CA

      I found your information very informative and interesting too. I do not have anemia but as a young woman I had mild symptoms and would need to take iron to help combat the low levels. I did not know that iron is given to patients through an IV.