Iron Infusion #3 – Allergic Reaction

Fall 2007 was when I had my first iron infusion due to my dangerously low ferritin levels that triggered a mild heart attack. The first infusion was with Infed and while the infusion itself went fine, afterward I developed an itchy rash over my whole body and was slightly feverish. So we knew I could not use that particular iron again.

So a few months later, my levels were low again and this time we use Venofer, which is given once per week over 5 weeks, instead of in one 5 hour dose like Infed. I did not notice any side effects during my first round of infusions with Venofer, which ended in June 2008.

Now here it is January 2009 and I’m needing an infusion once again. Go in last week and get my first of five Venofer and for three days felt ‘blah’: tired, ran a slight fever and generally felt unwell. I did not actually connect it to the infusion at all – because so much flu is going around, thought I was getting sick with a virus.

Fast forward to yesterday. I go in for my second round of Venofer and about halfway through the dose, started feeling ‘blah’ again: as in tired, weak, then started getting a headache, dizzy and really feeling bad. My arm was hurting where the infusion was going in. I mentioned that I didn’t feel well and what had happened last week – more as a side comment; but when she double-checked possible side-effects for Venofer initially – malaise was one. Mmmm? So she checks my blood pressure and it was way up 142/115. It was only 115/80 when I got there. She checked further into allergic reactions and I had nearly every one, except anaphalactic shock!

By the time we put all this together, my infusion was done (they only take 30 minutes). She got the IV out right away, called my doctor and he ordered steroids and tons of bloodwork. They kept me for a bit and I then went home.

We will wait on the bloodwork and I will converse with my doctor before I have any more infusions. I believe there is only Ferrilicit left to use – that’s pretty much it, as I believe most others are generics of the name brands.

I’ve read that many continue with the iron infusions, with side effects, and just take the steroids and Benedryl IV to counteract those. Not sure I’m comfortable doing that, as my symptoms seem to get progressively worse each time.

Unfortunately as a gastric bypass post-op, we especially have a nearly impossible time absorbing iron. The upper part of the small intestine is where the majority of iron is absborbed by the body – we no longer have that. So it’s difficult for us to absorb what we need with the short length of small intestine we have left. I’m 4.5 years post-op and have been battling this for about 1.5 years; even though I took iron supplements from day one after my surgery. It just isn’t enough.

If you are a gastric bypass post-op that had a malabsorptive procedure, I’d be very intersted to hear how your bloodwork is coming out and in particular what your iron and ferritin levels are and what supplements you’re taking. Getting the right form and amount of nutritional supplements is truly an art form!

Please post your comments or your experiences below.

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48 thoughts on “Iron Infusion #3 – Allergic Reaction

  1. Harold C. Medlin

    Two days ago I had my second iron infusion and it was tough. The first time I had one, the doctor had prescribed a lesser dose to see how I would react to it. My only problem then was an itchy feeling that was controlled by an antihistamine. The next day I felt tired but it a couple of weeks that stuff kicked in and, man, did I feel good.
    About two months later I had the second infusion with an increased dosage. Half way through, the itching started and this time it was not as controlled by the antihistamine, The drip was stopped and I only got about half of the amount prescribed.
    I was about an hour away from home and my wife drove me home (thank goodness) and I slept all the way and was completely exausted. I went immeditely to bed and slept 12 hours and was still as weak as water when I got up. This morning I was some better but tried to do some light work but in a couple of hours I was back in bed again.
    They say that that next time they will use a different type of iron and pump me up with antihistamine before we start.
    The need for all this was because of intestinal bleeding that followed a colonoscope and the removal of several large pollops.
    Next week I go back for another colonoscope and all the bleeder will be cauterized.
    Getting old is certainly no fun but it beats the other alternative.

    Reply
  2. Eugenia Chiles

    This will be my first time to get iron infusion. They don’t know why I have no blood. Just said this would take care of it this time. Is it normal for them to do this without finding the problem? They done a bone marrow biopsy and still don’t know.

    Reply
  3. Shannon

    I too am nearly 5 years pot op gastric bypass. Can not take oral iron. Now am anemic and very iron deficent. I recently had an Infed infusion. The infusion itself went well but shortly after my hands and other areas blistered and have been peeling for the past 3 weeks. A week after ny axillafy nodes were inflammed and swollen and my gums have been bleeding ever since the infusion (normally very healthy). I am an RN and wondering if anyone has had similar side effects

    Reply
  4. Traci Post author

    Hi Eugenia and Shannon. Thank you for your comments.

    Since I too am allergic to at least 3 forms of infusable iron, I’m no longer able to receive infusions.

    What I’m currently taking (and for now, at least, does seem to be working) is liquid iron by mouth. I had not tried liquid iron previously, only chewables. I needed infusions to quickly bring up my iron levels, and I’m hoping/praying that liquid iron will maintain my iron levels.I’m taking Floradix Iron (http://www.tripleclicks.com/detail.php?item=1025/10451908/), plus their liquid multivitamin and their liquid calcium + Vit. D – in addition to protein shakes and a few other vitamin supplements & weekly B12 shots.

    Reply
  5. DACOSTA

    I am 5yr post op gastric bypass, for the past year i have been fight fatigue, heart palpations, stomach bloating. Went to pcp did blood work iron was extremely low and vitamin D also below charts. After months of oral iron pill, levels stayed the same. So started Iron Infusion 2 wks ago the first time i was ok but this time my teeth started to hurt and sensitive to hot and cold, i never had that before.

    Reply
    1. Traci Post author

      I’ve never heard of that before either – but iron infusions seem to be something many are allergic to.

      Reply
  6. Renee

    Shannon, I had my first iron IV on a Wednesday. The nurses told me that any side affects would occur within 24 hours, most of which would occur immediately. On Sunday I began to have a very red rash, like solid sunburn, which ultimatley peeled like sunburn in the groin area. Also, my palms have tiny bumps and are extremely itchy. When I contacted the hospital the nurse checked with the pharmasist and they said that it was highly unlikely this was due to the iron infusion since it started appearing 4 days later, adding that most alergic reactions occur on the stomach or back, not the groin. Now that I’ve read many of these messages, I am sure that it was a side affect. I will contact the hemotologist and find out what type of iron infusion they used, so I know better for next time.

    Reply
    1. Traci Post author

      It’s possible it was a reaction. I wouldn’t completely rule it out. I had a rash after one of my infusions, and it started about 2 days later, if I’m remembering correctly.

      Reply
  7. Elise

    Had infed iron infusion today. I just feel flu like. Ended up here after blood transfusion a couple days ago due to menses hemmorhage…an ongoing problem and have had 2 procedures to try to correct. Did not love the infusion, but hopefully the flu like symptoms will go away. Nurse said next time they would not use benadryl and I am not comfortable with that. This is not the worst, but it is not how I expected to feel.

    Reply
    1. Traci Post author

      I’m so sorry you’re having to go through this Elise. I agree, I wouldn’t be comfortable without the Benedryl either. The Benedryl is used to counteract any potential allergic side effects. Although I do believe feeling flu-like is common after an iron infusion, if you do develop an allergic reaction, the next time would be when symptoms appear.

      Have you tried liquid iron – that you drink? I’m doing that now, so far – so good. Hoping it holds my levels up where they need to be.

      Reply
  8. Emily

    My sister had gastric bypass about 3 years ago. I don’t know the details of everything like you guys, but she got busy and stopped taking her iron pills. She started feeling tired and craving ice. Then apparently her body used up its extra stores of iron and she felt so bad she finally went to the doctor. Her iron was so low she had to take pills and get infusions. She had a reaction to the pill the gave her..a rash from the neck up. After the first infusion she felt nauseous but otherwise ok. Yesterday was her 2nd infusion. Well into the infusion she had an allergic reaction and went into anaphactic shock. Her legs swelled, she got hives, then she lost consciousness and her heart stopped. It was terrifying but fortunately she didn’t die. So everyone please take care of yourselves and always take your prescribed medicine. Also be make your doctor aware of any allergic reactions. Good Luck to all!

    Reply
  9. rose

    I had iron infusion last week,this was the third time .
    I had gastric bypass about 11 years ago ,and have had trouble with iron level since that time
    I have never had any bad results with the infusion until this last one ,and as I was almost finished with the infusion my stomach started cramping and diarrhea started I had trouble breathing and got dizzy and fainted and hit my head I started to sweat and my blood pressure dropped very low .The nurses said this had never happened because of iron infusion,so I am very glad to know this does happen ,thank you for the info..Rose

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  10. heather

    I am post op gastric bypass 4.5 yrs. Been struggling with low iron levels for last 8 mths ( could have been longer, but w/ getting labs done every 5 mths that is what I learned through lab results last fall..

    Had just learned I was pregnant at that time too….so all the following tranfusions have been while pregnant.

    Ferritin very low — 2… Got 5 tranfusions of Vennofer in a 3 month time frame and no problems at all..Ferritin got up to 33….
    Recent labs show Ferritin back to 11 after 3 months of no tranfusions…so back to get one this week..

    Got Infed for first time… ( 34 wks pregnant mind you) === within 2 minutes, severe allergic reaction ( extremely flush/hot in head, difficulty breathing, excruciating pain in lower back) – They were prompt to get me oxygen mask, and give me a IV Benadryl, and w/in minutes I was feeling normal again..

    Going back next week, and gameplan is to stick w/ Vennofer, and hope that I have continued success with that, as Infed didn’t go well with me.

    Reply
  11. jude

    I had a course of 3 iron infusions 2 weeks ago and am now feeling great ! Had no effects during 1st infusion ,but several hours later started to feel cold and had a lot of pain in my joints, thighs were very achey. The 2nd infusion 2 days later was painful, pain moving up from canula site.This was relieved by cold compress.3rd dose the next day caused no problems whatsoever!
    Now 2 weeks later I am so glad I had it done.I feel about 2 stone lighter and don’t feel like I am dragging myself around any more.Friends have commented that I look a lot better, skin improved ,eyes brighter.Havent felt like this since before 2 big bowel operations (colon and duodenum )and 6 mths of chemo, 4 years ago.
    I would certainly recommend this treatment for people who cannot tolerate oral iron.There are always risks but I have been led to believe that more serious ones are rare and with careful monitoring, problems can be dealt with.I’d say go for it !!

    Reply
  12. Trudy

    Dear Traci, I too had a RNY gastric bypass in 2005. I also have to give myself B-12 shots once a month and iron infussions. I have had three infussions over the past year and half with the most recent one 5 weeks ago. With the first two I never had a problem, however after this last infusion I had severe lower back pain and joint aches. Within a week I developed severe hives and a rash and sores from scratching them. I am covered mostly on my arms and legs with rash and sores and went to the doctor. I was told he thinkds I am having a reaction to the iron. My iron level was 5. I was extremely tired and knew I needed the iron, but now I don’t know what to do if I am allergic to the iron and have to have it the rest of my life due to malobsorbtion to oral iron. I have to see my hemotologist in two weeks. In the mean time I am takin prednisone for the reaction and meds for the itching and hives. I know your last posting was over a year ago, but I am courious to know what has helped you since. Please advise. Trudy from Ohio

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  13. lizzy

    i am 11 yrs post gastric bypass. had lost 130 lbs down to 140 and now weigh 200, 60 lbs up…but i do think it is my correct weight intended for me since birth..i gained all the weight to begin with on prednisone for 11 months and some other meds known to cause weight gain.

    i have lupus and never really had an “attack” until -2- yrs ago i got bit just inside my mouth by a brown recluse spider….they are deadly. i not only just about became disfigured, it set off a lupus attack of mammoth proportions!!!

    now my newest symptom is anemia…<10 l. i have a ton of question for my dr, next time i see him, only been there twice. i had an -8- hour iron and benedryl party. slept thru much of it…large dose of benedryl. i have had some rashes and itching, but that could be lupus as well.

    anyone have similar stories to share…i need to reach out and learn a lot about this as i feel sick 24/7 and i am only 53. my husband and i still want a life.

    thanks and feel well to all!!!

    Reply
  14. kelly wiltsie

    i have my first infusion yesterday and feel very very tired since then. i did have some flushing last evening but other than tiredness which to me seems worse than before the infusion no other side effects. would love to know when i can expect to feel better

    Reply
  15. TObi

    Im seven yrs post gastric bypass. My vit. d was 5, taking rx dose weekly and now at normal level. Low iron and ferriton for some time now. Change PCP as they did not know what to look for or how to treat pts with gastic bypass. New PCP is an Internal Med. Specialist and right on the money. Sent me to Hematologist on Friday, now waiting for authorization for Iron IV infusion. My iron is 8 and ferriton is 3, will have daily iv infusion for two weeks, then weekly infusion for 4 weeks, retest and if ferrition level reaches 100, will do maintance, if not, continue another 4 weeks. Nothing mentioned on type of iron i will be given, or any side effects…ready posts on internet has me paranoid. I have had irregular heat beats now waiting for my 24 hr holter monitor, massive raise me from the dead leg cramps at night and cold tingling sensations throughout my body and lets not forget to mention extreeme fatigue. I am really worried especially how this will effect my work attendance. Open ears for advice.

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  16. Gayla

    I had an infusion last night of venofer 1000mg, halfway through I presented with tachycardia, pain in flank area(kidneys, shortness of breath with pain on expiration, bilateral arm edema and numbness, and general feeling of “doom”. They stopped the iron infusion, gave me more benadryl and steroids and watched me til one a.m. Everything resolved except edema and pain in extremities, joints. Am home today and am weak, swollen and generally not feeling good. I too am gastric bypass patient. I am also battling ulcers at anastomosis, and I am tired of dealing with it. Just feel like venting..any suggestions will be appreciated.

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  17. Jennifer Scoggins

    In August of 2009, I was prepped and beginning the sample dose of the Infed infusion when I began having stomach pains and then about 1 minute after that began having trouble breathing. It felt like a ton of bricks were on my chest and then my muscles in my chest and lower back began to contract severely causing excruciating pain. I’ve never felt pain like that in all my life and I’ve given birth to 2 children, 1 of which was a natural childbirth. My husband (who happens to be an E.R. physician) was there watching everything unfold. The ambulance was called, steroids were given, then upon transfer to the E.R. I stayed there a few hours while they did other tests, heart monitoring, gave Toradol, Zofran, etc to help with the reaction. I am now on Repliva, which is a prescription iron supplement and have done quite well with it. I have no adverse side effects from taking it. I strongly encourage people who read this to look into prescription iron supplements like the liquid one Traci suggested or the one I am taking. I would hate to see anyone go through such a horrible experience as the one I went through. Be an advocate for yourself!

    Reply
  18. MM

    I had gastric bypass in 2006. I found out in March I had very low iron (7). Every doctor I spoke with thought I had cancer or internal bleading. A million test later… I found out that the very low iron is due to the gastric bypass. My iron is not being absorbed. The hemetologist wants to try 3 weeks with iron pills. He does not seem to think it will work. After that I will start on injections or infusions. I am not sure exactly what the next step will be.

    Reply
  19. Traci Post author

    Like many of you, being now almost 7 years out from my RNY – I can honestly say I regret having the surgery.

    I do not have more energy than when I was morbidly obese; I just traded one set of problems for another.

    I have taken my supplements, and still have had these issues. I worry about those post-ops whose doctors did not recommend a full well-rounded supplementation schedule, as they could get to a worse place with their health, and much sooner.

    I do believe that some people’s bodies will react and absorb nutrients differently – but there are an awful lot of folks having these issues, many of whom have been taking supplements.

    If our bodies will no longer absorb iron well, B12 at all, calcium, vitamin D, etc….then we have some serious problems. Supplementing will help, obviously – but finding the right balance of how much and how often for each supplement is tough. There’s no one right answer that works for everyone.

    So if you are a gastric bypass post-op, and having issues with fatigue or other symptoms: get yourself to the doctor, get the full post-op blood work done to see where your levels are and adjust your supplementing accordingly. Iron infusions may be needed… talk to your doctor.

    Traci

    Reply
  20. kay

    I am going through the same thing you all are going through i had alot of health issues before i got the gastric bypass i am satisfied with the weight lose but i now have an ulcer, low iron etc. i went for my first iron infusion on friday, i was feeling ok friday but now i feel like i been hit by a train. i am scheduled to go next friday for the second one but having second thoughts about getting it, i feel worse now then i did before my surgery. since 2009 i have been in and out of the hospital, had several surgeries and now fighting this low iron this is crazy you cant win for losing. i had 3 heart attacks in the past so getting the surgery i thought would be good for my heart but all health issues i had before are gone now i have a new set of problems.

    Reply
    1. Traci Post author

      Hi Kay – so sorry to hear you are struggling. Have you also been taking B12? Low B12 can cause pernicious anemia and also make you very tired.

      Reply
  21. Shawn

    Hi…I am 7 years post gastric bypass. In the spring of 08 I started with iron deficiency anemia and too had two iron infusions that spring (infed???over a 5 hour period). I had no problems with either of those infusions. Eventually felt pretty good again. A month ago I found out I was extremely anemic again…hematocrit and hemoglobin low. I again had the ifed. I was all done the infusion, IV out and ready to go home when it all started. My muscles gradually started to feel as if I had extreme fluid retention (not visible), my muscles ached, I became pale, almost fainted, had a bout of diarrhea, diaphoresis, Thought I was starting to have trouble breathing. Had to re-start IV and give me IV push benadryl, prednisone and lasix. It corrected the reaction. I was suppose to go back in two week to have another but my doctor is a little concerned about me having more IV iron. Me too…especially since reading your stories. Don’t know where to go from here. Sure would like my energy back.

    Reply
    1. Traci Post author

      Shawn
      So sorry to hear you had a reaction to the iron infusion. It’s actually very common to not have a reaction at the first infusion, but to have one second or subsequent infusions – and from my own experience, and from what I hear from others – each subsequent infusion can cause increasingly worse reactions.

      There are other types of infusable iron, aside form infed. So you could try one of those – and with your history, they will be prepared for any signs of reaction.

      Liquid iron supplements, honestly are the best. For us, as gastric bypass post-ops, they offer us the best absorption ability possible.

      Good luck to you and let me know what you decide and how it goes for you.

      Traci

      Reply
  22. Kim

    Traci-

    I have been taking liquid iron Ferrous Sulfate Elixir by Hi- Tech Pharmacal. 1 teaspoon is 44 mg of iron, it tastes wicked and is starting to stain my teeth.The doc has me taking 3 tablespoons a day. Does the Floradix taste horrible & stain teeth?

    Reply
  23. OLivette

    I just had my 3rd iron infusion today, after the first one I came home, laid down and waited for the side effects. There was none. The second one, I felt out of it on the second day, kind of tired and just not feeling good. Today, just for a second midway through the infusion, I felt faint, didn’t last long and I have felt fine since (finished about 4 hrs ago). I am 55 yrs. old and suffer from heavy menstrual bleeding because of Fibroids. I have started having some symtons of menopause. My Gyn is trying to wait it out without having a hysterectomy, because once I go through menopause the Fibroids will shrink up and go away. I’m all for that. The infusion has really helped with the anemia. The treatments has really helped me feel so much better than before. The anemia was causing me to have palpations, shortness of breath, chest pains, hair loss, and just plan tired. I couldn’t walk up a short flight of stairs without huffing and puffing. Forget trying to do any exercise. So far I haven’t had a cycle for about 7 weeks. It was normal for me to have one every 21 days for about 34 four years. Only missed two periods in my life and they both have a name. (one boy and one girl).
    It’s been fun chatting, I pray all of you will get well soon.

    Miss Vette

    Reply
  24. Kathy

    Gee!!! I am 8 yrs. out from gastric by-pass and have had many, many kidney stones, and problems with iron levels being extremely low…had first infusion in June and go back tomorrow for round 2. Now I am very nervous about it! I could not believe I did not have a reaction the first time. I am so alergic to everything it seems. So wondering if round 2 will be different…I also give myself B-12 injections weekly.
    Even thou I am having these problems I would still have gastric by-pass. I hated being so overweight! Some of my meds. have caused me to gain about 25 pounds and I am trying to loose that weight, but I am happy now and can do so much more…I am sorry all of you are having these problems, but it is nice to know it is not just me! Hope all goes well tomorrow…we will see…thanks for all the info!!! I will let you know how it goes… Kathy

    Reply
  25. Ginger

    HI all I just started with a low count it wen from34 down to 7.I am due to go for my first infusion this saterday & after reading this it does not make me a happy camper.Being a Gastric By Pass patient it will be (4) years thisOctober Halloween.Now I have a severe iron problem just like all of you.I am so so tired,my heart is having palptations,rashes & feeling like I am going to faint.I lost 186 lbs & have been so happy until I feel like crap.I also started loosing my hair again.Anyone else having these issues along with the iron
    I am sincerly sorry about the reactions you are havin as well as feeling just plain lousy.I wish there was
    something I could do something to make you feel better.All I can say is your not alone I am with you.Since this alos my appitite is has gone to nothing I could care if I eat anything.Anyone else?
    I would greatly apreciate it if anyone else can share.
    Because of this count dropping so low I am being made to have a colononoscopy & endoscopy,This is to make sure do not have a bleed any where I live near Boston have a great Hemetalogist because I have a disease caused Von Willibrands, my blood does not clot.I wish everyone the best & let’s keep each other up to date.
    Hugs,Ginger

    Reply
  26. jennifer

    7yrs after the biggest mistake I have ever made, a gastric by pass! I am in a huge pickle between life and death. Let me explain. 2 years after the surgery I was diagnosed with pernicious anemia.I went through 17 weeks is iron infusions but I was allgeric to the iron so they used steroids and claritin for the reactions.see I also am allergic to benadryl.but they figured it out and my iron levels went up.then I became pregnant and me and my baby were near death due to low iron so I had a blood transfusion as a last resort.in 2009 I became very sick and had surgery again they did a iron infusion for 8 hours, and I was okay along with the steroids. And clarartin. A few months later I began to get sick again with lots of testing and severe pain and despair. I was diagnoised With lupus,fibromyalgia,and RA.it was astonishing to be so healthy when I was obese. Now its 2011 and I recently was diagnosed with malbasortion disease.I know when does it end, never I am currently. Awaiting another blood transfusion due to the fact that they have tried ever type of iron infusion. And I am highly allergic. To them all. My only hope of servival is to have blood transfusion The rest of my life when my levels get low.it is a struggle everyday to stay healthy .

    Reply
    1. Traci Post author

      I’m so sorry you’re having to go through all this Jennifer. {{{{hugs}}}

      Reply
  27. Sonya Griffey

    I had GB in 2004, baby born in 2007, after her birth my Feritin was a 2, of course pills didn’t work, but they tried them anyway. I ended up getting IV infusion twice a week for two months,because my levels would not go up. During that time my veins decided to collapse so they had a portacath implanted into my chest for access. I have not had therapy in about 1 year now, so I am grateful that the IV therapy has lasted. I did end up with two follow up sessions shortly after Dr. decided that my levels were ok, only because some of my other blood work came back still out of whack. I am now 16 weeks pregnant and my levels are holding as so far, but I have been warned that they could drop at any given time.

    Reply
    1. Traci Post author

      Ugh Sonya! A portacath! Wow – bummer. Praying your levels hold.

      What iron supplement are you taking? We all need to be taking some type of iron supplement, in addition to our other supplements. I am currently taking Vitalady Tender Iron (60mg) with Vitamin C (400mg) Capsules, 400/btl. They also have this in a wafer that dissolves in your mouth. I personally take two per day, at two different times. Another option is to try a liquid iron.

      Reply
  28. Amanda Taylor

    I am so glad I ran across your web site. I had gastric bypass surgery over 9 years ago. I have had anemia and it had gotten really bad when I was pregnant with my two kids. At that time iron supplements seemed to help it rise a bit and I was OK until recently. My immune system seemed to really suffer… I am getting sick with every cold my kids would get. I went to the doctor and my iron was really really low. She sent me to a hemotologist. I had all the symptoms of anemia. cold, dip nail, dizziness,etc. They took my blood work and my iron was under a 4. Yesterday I had my first transfusion with Venofer. The infusion seemed to go fine. They gave me a benodryl and tylenol beforehand and I mostly slept through it. About 5 hours later when I got home I started to feel bad… headache and blah.Then the fever hit and I had the chills. I had a heating blanket on me and just felt SO cold. My arm where they gave me the infusion really hurt as well and was swollen. After suffering with this for an hour, I called my mom (A nurse) and she thought I might be having an allergic reaction. I took some benodryl and fell asleep. Awaking this morning, I feel somewhat better. No longer a fever but my head is still hurting. I took some tylenol but I am scheduled for another transfusion Friday and really nervous about it. I do not want it to get worse the second time around like it did for you.

    Reply
  29. Kim

    Hello and thanks so much for sharing your experience. I am anemic and suffer from Von Willebrand disease. I had my first iron infusion in January 2011. I’m not sure about which brand was used but I went into Anaphylactic shock. My blood pressure went way low before my eyes (I looked at the machine) after I told the nurse my throat was closing and I was nauseated. Not sure what the gave me at that time but my dad rushed me out of there and took me to the emergency room. I was kept there for 10 hours before I was released. So the hematologist changed my iron and scheduled me for 8 wks of infusions. I only went for two and quit because there were no problems/side effects and I felt better. Fast forward to 2/28/12, I went to the hematologist because know my iron is low again due to heavy menses. He scheduled me for iron infusions again starting that day. I was only given Tylenol and didn’t experience any problems except for being tired. Yesterday when I woke up, my right arm was achy as if I’s slept on it. As it got later in the day, it started aching (to the bone) as if it had been snatched out of the socket! I took Tylenol extra strength and it did nothing for the pain so I went to sleep. I woke up in the middle of the night sweating and feeling feverish and itchy all over my back and stomach. My arm felt sore this morning but now my lower back is aching and I still feel feverish. I wonder why the doctor did not inform me of the side effects and let me know what happened to me the first time. This is so scary and I am scheduled for more of this seven more times. I wonder if the Benadryl will counteract some of the side effects along with the Tylenol.

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  30. Cindy Morency

    Wow I am so glad I ran across this site and I hope it’s still active. I as well am 7yrs post gastric bypass…..my iron levels are low, I tried taking oral and the diareah increased I had to stop taking them. I am so exhausted and tired. I fractured my leg/knee last October and it still will not heal. Today I went for my first iron infusin and within minutes my chest felt like it had a ton of bricks on it, I could not breat, then the worst pain imaginable in my lower back kidney area the pains starting shooting down my legs my body turned bright red then I turned purple it felt like my body was in convulsions. The reacted quickly and pumped my body with drugs. At one pointy I heard my doctor tell them to give me morphine but the nurse. Said they couldn’t because of something else. This went on for about 10 minutes or so then everything started easing up and after awhile I was able to leave slept the rest of the day. Now my lowers back is still hurting. Going back next week for the hematologist to figure out where to go now. The said they have to start with the synthetic iron first due to insurance. I am so not sure gastric bypass was such a wise decision only lost 100 pounds needed to looose 200 pounds I barely eat don’t have any desires to eat, nothing taste good, I am tired all the time, have had many hernia surgerys, have a blood clotting disorder and blood cots in legs, diabetic, I work 13+ hours a day and I really need my job . I really need some help feels like I am all alone and I read this and see that I am not alone……reaching out for anyone,,,,,,,,,needs a friend that understands. I am scared,

    Reply
  31. MaryJo

    I just had four rounds of iron and am now having a reaction today I have a rash and a low-grade fever and my gums are bleeding and hurt. This is my second overall round of iron and I hear people have reactions in their second or third I guess I’m just like that. Scared that I’m having infusions for the rest my life and what if I am allergic to the one that you’re not supposed to have as much reaction too… This does suck….regrets…yes I have a few.

    Reply
    1. Traci Post author

      Sorry to hear that MaryJo. Have you tried the Carbonyl iron capsules from Vitalady.com? Seriously, they do work for me; and considering that I had no other choice – it’s a good thing!

      Reply
  32. Latisha

    I am 2 year post op gastric bypass. I have lost a little over 100 pounds and I am no longer diabetic. However, coupled with the fact that I have Uterine fibroids with heavy and long menstrual cycles and the lack of iron absorbtion, I have become severly anemic. Iron, Ferritin, and Hemoglobin levels were dangerously low. I underwent 2 months of iron infusions (INFED) 3 times a week – 45 minutes each time. Levels came up as expected, but on the 2 month follow-up, levels were back dangerously low. So, I had to do treatment again, this time for 6 weeks, 2 times a week, for 90 minute sessions. I mentioned that I have Uterine fibroids that cause long and heavy periods. I’m sheduled to have a hysterectomy in January. Supposedly to help with the iron deficiency. Now, I’m even more leary, because, you guys are having the iron issues too. Having a hysterectomy just may not fix my iron problem. So, I’m at a dilemma…

    Reply
    1. Traci Post author

      I had a similar situation with fibroids, excessive bleeding and severe anemia BEFORE my WLS. Because of the type of fibroids I had, and my bleeding so severe, I too had a total hysterectomy to stop the bleeding. If you have fibroids, and that is definitely causing excessive bleeding and anemia, then you must address that issue. If after other options to remedy the fibroids has not been successful – then a hysterectomy may be the answer.

      While we, as WLS post-ops, definitely deal with iron absorption issues, at least we can supplement and/or have infusions to remedy that. But with fibroids that are causing excessive bleeding, it’s hard to supplement or infuse enough to combat that much blood loss. You need to fix that first. :)

      Reply
  33. Ginger Nickeson

    I am starting my first treatment of Venofer in two days…..Wow, I didn’t realize all the possible side effects even though I did read about them. Will let you you know how it goes…….

    Reply
  34. Ginger Nickeson

    Wow…I just read your stories and I really feel for all of you who have hadthese awful reactions

    Reply
  35. Marla Rossi

    My story,,,twenty three yrs ago I had a bypass, and suffer with low vitamins and levels of iron. After a test my doctor was scared when my ferritin was a 5, so he sent me to a doctor to correct. first doctor used lg bag of Infed,,,,I got side effects,itching so intense, inside my body, this horrible taste and sweating,…I went to another blood doctor and he also said when I’m done helping you, your feel wonderful. after three infusions of Venofer I feel terrible, flu like, nausea, body aches, sweating, pain in kidney area, sometimes trouble breathing,,,my neighbor told me today I need to call the doctor , I look terrible, have no energy, thinking I had the flu, not side effects.Remember this is our body, and it tells you how it feels,,,,,go with your gut feeling…..if it doesn’t feel right, make your own decisions.
    Thanks for listening.

    Reply
    1. Traci Post author

      Hi Marla
      How are you feeling now?! I had the same experience as you, and can no longer do iron infusions. I now take carbonyl iron I get from VitaLady.com.

      Reply
  36. nakia

    I have experienced my second round of iv iron. I had rash on my hands and feet. I spoke with my hemotologist before second treatment. We tried a new treatment that was given over a two week period. However I have walked away with the exact same side affects. Rough itchy peeling hands!

    Nakia

    Reply
    1. Traci Post author

      Hi Nakia! Ack! No fun! My doc said there is a brand new type of infusable iron now available called: Feraheme. Perhaps see if your doctor can try that for you.

      My ferritin and levels on many things are off (again); so we’re going to schedule me for an infusion with Feraheme. We’ll do the Benedryl and steroid before the infusion, just in case – but despite my taking carbonyl iron regularly, I’m just not absorbing enough of it and my ferritin has tanked again.

      Reply

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