My Experience with Iron Infusion Side Effects
Hi. My name is Kay and I have iron deficiency anemia.
Because of my anemia, I have been getting iron infusions for some time now. During my second series of infusions with Dextran, I suffered from serious side effects. I tried to find personal experiences online just to know I wasn't alone and to find out how long complications generally last. There weren't many personal experiences but the ones I found helped! I would like to share my own story in hopes that it provides a bit of comfort for somebody else who has had a reaction from their iron infusion.
More of My Iron Infusion Experiences!
- Intravenous Iron Infusion and Me
Wondering what a round of iron infusions might look like? Here is my experience.
- My Iron Infusion with Ferrlecit
For the last several years, I have had numerous rounds of IV infusions to combat my Iron Deficiency Anemia. Last month, I tried a Ferrlecit for the first time and would like to share my experience.
- My Life Infused
A new blog detailing my infusion adventures.
Seven Months After My First Iron Infusions
so very tired
If you click on the above link, you can read about my experience with Anemia along with my first two infusions last December. There you can learn a bit more about the infusion process as well as the necessity of this procedure for me.
And now begins a new chapter in my infusion experience:
About six months after my last two infusions, I knew it was time to have my iron-levels checked again. I was feeling fatigued and back to taking my daily naps. We were, however, going through a move so I thought the tiredness could just be related to that craziness and put off my appointment. I had a check up already scheduled for July and figured I'd just wait.
The first week of July I had an appointment just to draw the blood with my actual check up one week later. The week gave them time to get all the results back. My doctor and I spoke during the appointment. I explained about my move and exhaustion and that I just didn't know if it was normal or actually anemia. Turns out, I was down to undetectable iron levels again. She wanted me to start my series of two infusions the next day.
Okay, I admit, I wasn't overly excited to be having another infusion but, I really liked having energy after the last two infusions so I was willing. My side effects were fairly mild the first time. True, I was exhausted and felt fluish afterward but that wasn't a huge deal.
My Third Infusion
seven months after the first two
I arrived the next morning for my next infusion. I remembered a few tips that made my last infusions easier so I
- drank a couple glasses of water before leaving the house
- brought my own pillow
- just relaxed because I knew what to expect
While waiting for them to start my IV. Another patient and I began conversing. He had severe anemia as a result of some birth defects and had to have infusions once a month. As we were conversing, the Benadryl in the IV kicked in and within minutes I was out. I don't even remember them hooking up the iron. When I say this was the smoothest appointment, it is simply because I slept through the whole thing. The next thing I know, the beeping of the machine telling the nurse I was done woke up up. I hadn't had a full night's sleep the night before and maybe that helped but sure made for an easy infusion!
After my infusion, I was tired. The Benadryl really does wipe me out. I came home and slept a few more hours. After that I was awake but still had that fuzzy-headed feeling that tends to stay with me.
The next morning I woke up and aside from some very mild aches, I was just fine. I didn't feel that flu-like feeling I'd had with the last two. I really thought I was adjusting to the infusions and felt really good about that.
Side Effects of Dextran
The most severe complications related to Dextran can include:
- low blood pressure
- death as a result of a fatal allergic reaction
These complications are rare but do occur.
Other side effects may be a bit more common and include:
- muscle aches
- joint aches
- soreness at injection site
- metallic taste in mouth
Complications Set In!
Let me just say, I apologize that this may be a little graphic but I think others going through this might like to know they are not alone.
Although I had been feeling pretty good the morning after my infusion, by the early afternoon, I had a headache. By mid afternoon, my headache felt migraine strength and nausea took hold in ways I hadn't even experienced with morning sickness. The nausea literally came in waves and anything in my stomach would come forcefully out. I couldn't even hold down any sort of medication for my splitting headache. Just laying my head on a pillow was painful so I propped my self up on an office chair and footstool so my head wasn't leaning against anything and slept as much as possible. For two days, I couldn't keep any food or medication down and my headache was incredibly intense. Because my stomach had completely emptied, I was very shaky, lightheaded and just ill. I was about the most sick I could ever remember being.
I called the doctor first thing after the weekend. I was told that, yes, sometimes this does happen to patients. They cancelled my next infusion and scheduled me to meet with the doctor. They told me that in the meantime I should just rest and try to keep fluids down. Easier said than done. I turned down medication but, in retrospect, something for the nausea would have been nice. The next day, my urine was orange and cloudy. My lower abdomen and lower back hurt intensely. I slept and slept. I felt just absolutely achy all over and was running a temperature between 99 and 100 during all of this.
After two days, the intenseness of the vomiting eased. but violent diarrhea set in. For the next twelve days, I'd struggle with vomiting and diarrhea. Generally, my temperature would go over 99 just before one of these episodes. A week and a half after my infusion, I had dropped my kids off to swim just three minutes from our house. I felt a wave of nausea come over me so I decided to go home rather than get sick in the restroom there. I didn't even make it home. I had to shower and change before picking them up again. In between bouts of nausea and diarrhea, I was tired but starting to get back into life again. Two weeks after the infusion, I had my first day without vomiting or diarrhea and am now feeling quite a bit better.
- My Iron Infusions - Switching from Dextran to Venofer
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...
My Follow-Up Appointment
During the midst of this, I was asked to see the Hematologist. I found out that my blood pressure was really low. Usually I have very good blood pressure so this was surprising. Unfortunately, Dextran (the form of iron they used) is no longer an option for me. My body was just overloaded with it and rebelled. They said they wouldn't chance that again so they'll try a new type of iron (Venofer) next time. They want to give my body a month to recover. So, in one month, I will go back in to have my levels checked and then, a week later, see the doctor to decide our next course of action.
While I would be in no hurry for the Dextran again, I do feel a bit of remorse. The doctor said this was the fastest acting iron. Generally it takes a month to kick in but other irons take even longer. I also found out that they will likely do smaller doses more frequently.
Update: I have included the link to my experience switching to Venofer.
A Helpful Forum! - talk to others going through this same thing
- Anemia Message Board
A forum to connect with others going through infusions and dealing with anemia.
Are you currently going through infusions or about to go through one? Have you had a severe reaction? Comments left on this page help others as well. Also, feel free to email me at email@example.com
I'd Love To Hear From You
Michelle Holmes on February 02, 2019:
I’m so glad (and of course not
Andrea on November 23, 2018:
I have to start iron infusion december 10 to 19 I’m little scared!!! They say only 2 hours !!! my blood level 86 it’s really bad ? I’m always tired and hurts everywhere my body is so bad!! My menstrual cycle is bad:((( i hope after this I feel better my kids need me and I need energy!!
TRENESE on September 09, 2018:
WELL I HAD MY FIRST IRON INFUSION 3 DAYS AGO. I HAVE A FEAR OF NEEDLES SO THE MORNING OF I HAD A PANIC ATTACK. FOR THE PAST 10 PLUS YEARS I HAD REALY BAD MENSTRUAL CYCLES, ANED MORE THING'S WITH MY HEALTH. HALF OF THE DOC'S I C TELL MY I AM TO YOUNG TO HAVE A HYSTERECTOMY THE OTHER'S SAY I SHOULD PUSH FOR IT. MY GRANDMOTHER, MOTHER ,BOTH SISTER'S HAVE THE SAME PROBLEM, I GO BACK THIS WEEK FOR ROUND 2. BUT NOW WHEN I TRIED TO PEE THE PAST FEW TIMES TODAY IT HURTED SO BAD, MY BACK N MY BODY IS KILLING ME, I AM STILL SOME WHAT WEAK AND AND OUT OF IT. EVERY LILTTLE THING IS RUNNING ME CRAZY. I HAVE TO SLEEP WITH NOTHING ON BECAUSE I AM SO HOT @ NIGHT. AND THAT IS CRAZY THE AIR IS ON 72 AND I HAVE A FAN ON ME. ONE MIN I AM HOT THAN THE NEXT MIN I AM COLD. MY B/P HAS BEEN VERY LOW, FROM MY UNDERSTANDING THAT TOO IS A SIDE EFF. NOT SURE WHAT TO DO ABOUT NEXT WEEK...………..
Mercedus Long from Maryland on August 12, 2018:
I really hope you feel better soon. I've had iron transfusions but did not experience any if the side effects that you or anyone else in the comments have mentioned. Mine was done at my hemotologist clinic twice a week for about 4 weeks to raise my iron level for surgery. He told me the side effects, and I guess he really thought I would experience them as I was spoken to at length on my second visit.
I hope you all feel better and good luck
Kay (author) on August 02, 2018:
Marly, huge hugs for you. You are not alone. It really does get better and hopefully you will be feeling better in the next week or two.
Marly MacDonald on July 27, 2018:
I had three infusions - each was one week apart. I really haven't felt well since. So glad to have found some on line information.
Lavi on May 02, 2018:
I had an iron infusion on Monday for low ferritin It was Ferinject brand. I was fine the next day. On 3rd day I felt dreadful with flu like symtoms..headache, fever, body pain, nausea, vomiting, diarrhoea and feeling exhausted in general. No energy to get up from bed. It's so good to see others comments with the infusion. I feel that I am not alone. May be I should try different form next time.
Jody on March 03, 2018:
I am new to infusions. I have IDA because I had gastric bypass 12 years ago and have malabsorption. I had 750mg of injectafer the first time and the next day experienced horrendous flu-like symptoms. Severe muscle ache, cough, fever. It lasted just 24 hours and then vanished. The doctor switched me to Venofer and spread out the infusions to 200mg every other day for four treatments. The first one went great, just a mild headache that day. The second was where things got strange; headache chest pain that felt like it was inside my rib bones and breast bone, joint pain in the left arm where the IV was (wrist, elbow, shoulder.) And then panic attacks set in. That night my heart stayed near 90 for long periods and when I tried to sleep it was like my body needed me to get up and run from danger. Full blown panic attacks. It only lasted one night though. After a day I returned to get my 3rd infusion; the doctor slowed the drip rate. After infusion same symptoms as before. Wicked chest and bone pain, headache and a full night of panic attacks. I needed the iron so badly (my ferritin is 4 and all other values tanked) I decided to risk the 4th and final infusion. Thirty minutes in my IV arm began to throb badly, we added saline. Within ten minutes I felt a wave of nausea, my face went bright red and hot and my heart rate shot up to 165 and my BP was through the roof. Nurses scrambled, stopped the drip and called the dr. By the time he ran over symptoms stopped and my heart rate fell back to 63 with perfect BP. They offered me Benadryl and a steroid which I refused since my breathing was good and no allergic reaction was present. I didn’t want to compound my issues with anymore drugs. I didn’t let them restart the drip, I had about 5 mins left is all. I hung out a good while on saline and this episode happened again, like a bad panic attack. I refused the medication included an offer of Ativan as I’m sure they thought I was making the symptoms up due to fear. I left and the day went okay until that afternoon when the severe rib cage and left arm bone pain set in. I took Advil and reported it to the doctor as it was Friday and I figured I’d better before the weekend. They called in a steroid pack which I didn’t pick up, again fearing I’d compound side effects. That night like clockwork, six massive panic attacks. My husband stayed up all night with me. This was just last night, today I am tired and the anxiety has ebbed away but the bone pain in my ribs/breast bone is there off and on. It’s all on the left and runs down my left arm; the arm they used for all 5 infusions. I am glad I got the iron in, it’s very important....but I hope these side effects go away quickly. I have the worst smell/taste of metal or dirty pennies in my sinuses...yuk!
Kay (author) on October 27, 2017:
I am so sorry. I find that generally by about four to five weeks after an infusion, I would feel so much better. The first couple weeks often left me feeling like I had a virus. Just not fun. Hope you feel better soon.
DW on October 25, 2017:
2 infusions . Insomnia and restless legs fixed but chronic joint pain
Stephanie on June 07, 2017:
I'm newly diagnosed anemic. Scheduled to see a Hematologist this week. What should I expect? Will they require more testing or labs or will they be able to order infusions then? I just want to feel better.... :'(
Kay (author) on April 17, 2017:
Hello Kaye. Yes, these side effects can happen. Always best to let your doctor know though. They might want to switch your iron.
Kaye on April 15, 2017:
I've suffered from ulcerative colitis since I was 12, im now 17. I've recently been transferred from paediatric outpatients to adult and my new doctor recommended that I have an iron IV infusion. Id never had one before and assumed it would be a straightforward procedure with no complications.
I had the iron infusion 4 days ago on Tuesday. I felt fine the rest of Tues and went to bed on Wednesday night with a bit of a headache. I woke up on Thursday with a migraine like headache, ran some errands and by the time I got home around 3 had to lie in bed because of the pain. On Thursday night I woke up with a fever, somewhat delirious and having hallucinations and then vomited twice. I was in bed with aches and pains, a fever, nausea all day. I felt as if I had a really bad virus. I was also unable to eat.
It's now Saturday and I still feel weak, nauseous and have aches but am feeling a lot better.
I wanted to know if this is common of an iron infusion.
Lena on January 08, 2017:
Ok, had my iron infusion on Friday (ferrinject) since last night, my head feels like it's gonna explode and ice had a fever ranging from 39 celsius to 40. 20 Celsius. I rang the nurse and she says I should go to the ED... since I know it's an adverse reaction can I just stay home??
Kay (author) on December 14, 2016:
Yes, cramping and pains do happen sometimes. I'm sorry :(
Kay on December 08, 2016:
Hey just wondering if lower stomach cramps are something you experienced at all ? I've had my first infusion today & I fell a little weird it my stomach I keep getting random lower cramps & I don't know if this is normal ?
Daniel Hunter from Gold Coast on December 02, 2016:
Thank you for your article. Iron deficiency is terrible.
Fred Breckenridge on November 25, 2016:
Fred Breckenridge I think having constant headaches for the last three days since my iron infusion also feeling very tired.
Carly on October 08, 2016:
The first time I had an infusion I did not have benadryl and afterwards it hurt to walk. My muscles in my leg were very painful . Even felt swollen. The next three times I had benadryl and my legs felt much better. I had an infusion yesterday and I have noticed my left arm in which they used hurt whilst doing. A very strong pressure. The I v seemed o k too. I mean no sign of it leaking out of the vein. My legs ached later on a little. I feel extra tired after an infusion. Not sure how long it will take to work. My hbg has actually got a little lower in between my third and fourth one. I have reactive gastritis so I.V seems a better solution. Just a little expensive :(
Kay (author) on March 06, 2016:
Oh Amy, I am so sorry! How awful. How are you doing now? What did the doctor say? Will they be trying another iron or is it too dangerous? Praying for you.
Amy on March 03, 2016:
Well thanks for your article as I lay here after almost dying yesterday from the iron infusion. My story is similar to yours in many ways. Been doing iron infusions for years without a problem until the dr wanted to try a new faster form so I agreed to do that bc with my work schedule I wouldn't be able to go as often so that sounded great to me!
Sat down as I did two weeks prior. The only thing that was different was that I asked for less Benedryl because I had to drive and go home to work after. So I got the bendryl and felt very nauseous & almost puked but it subsided so they started the high powered iron infusion. Within seconds I felt my face burning up and started puking. They stopped it and put me on saline drip. I thought I was going to mess myself right there puking so I asked to go to the bathroom. I wasn't standing for more than 5 steps and I must of blacked out. The next thing I remember is the cute ambulance guys asking me lots of questions but I was in & out of it. They spent a lot of time on me in the ambulance took me to ER and after a day there I was finally feeling better to go home. I called it my near death experience and am still home recovering as I write this to you. I really feel lucky to have made it & hope noone else goes through this ever like me!
Kay (author) on October 27, 2015:
Lola, I am so very sorry. It's hard to say when you'll feel better but it really should get better. If it doesn't and you feel really sick, give your doctor a call. Please, keep us updated.
lola on October 27, 2015:
the same thing is happening to me right now! has been sick since my iron infusion one week ago!! the first two days fevers just couldn't get out of bed !! I'am having all the side affects listed above... i wonder when i'll be able to feel ok again ...
cheryll on July 30, 2015:
I have cancelled botj my I'm petrified of becoming sick
My ferritin is a 4 I feel exhausted and crave unusal foods however I feel I'd rather be tbis than what that poor person experienced
I'm a so. Glenn parent in every sense of the word no help whatsoever so sickness Luke that for me is a definite no
So sorry to read such horrid happenings with infusions and I hope I cam figure mind out naturally
I've had it for two years now it was at a 7 f for a year and no one was concerned then
Thank you for sharing
Meldoran77 on May 28, 2015:
I had allergic reactions to all iv forms of iron. Talking iron by mouth is worse... I finally found Sundown gummy vitamins, no soy, lactose, gluten... No preservatives... It has lots of folic acid, the precursor to iron. My levels are still low, but coming up slowly... Hope this helps someone...
Kay (author) on April 11, 2015:
How awful. I am so sorry. Talk to your doctor. You won't want to use this same iron again next time. Please, let us know what they say. (((hugs))) and I hope you feel better soon.
amissa on April 11, 2015:
Hi i just start doing the iron iv infusion,and on the first day I was ok,just a mild headache,but oh my god the nexts day I was in so much pain, my back and legs, and pelvics area hurts so bad and its hard for me to sleep,I wanted to go to the er,but I already know, thats all I will get is pain meds....
Kay (author) on March 17, 2015:
Might be the type of iron they are using. They could try another type next time. Hope you feel better!
Elizabeth on March 13, 2015:
I had the iron infusion starying with the D. Today is friday i had it wednesday...i had to take phenergan for nausea and then the screaming diarriea set in...still having it...and it hurts so bad...ive taking everything otc for it..and it slows the ungerncy to go but holy cow my rear end is sooo tender...i also have lupus, fibro, sjogrens...and my iron levels are fine but my hemaglobin is low. Taking iron pills caused me bad constapation..but now the infusions is causeing the opposit!
Kay (author) on March 13, 2015:
Talk to your doctor. There are other irons out they can try. Please, let us know when you find out which iron this is. I wonder if it was Dextran?
Heather on March 12, 2015:
Hi there, Im so happy I found this page! I have crohns and therefore need to get iron infusions. I just received my second infusion, this "round " you could say I go once every two weeks until my levels get back up so I went in the summer and the year before that.
I had iron this past MOnday and two week ago but let me tell you this is the worst side effects yet. I feel AWFUL, so sick I can't eat at all. I have the WORST head ache in the world and I'm suppose to go for another infusion in two weeks and I wanna miss it so badly because I can't stand this. What would you recommend? I'm not sure the name of the iron I've been given but I will check and maybe if I switch it would help? Thanks so much for sharing your story, it helps me I thought I was just going crazy.
Kay (author) on January 06, 2015:
I've heard from others who have had similar type pain so I'd think it was from the infusion. Mention it to your doctor. Do you have any more infusions scheduled or was that it? Eight hours is a long infusion!
Sherry Barlow on January 06, 2015:
I to have had several iron infusions. I had an 8 hour iron infusion last week and they increased my iron this time. The next day aproximately 24 hours I had pounding bone pain in my back and neck. It didn't last but couple days. Back to normal now looking forward to getting my energy back. I am having weird hot and cold sensations is that normal? I would love to make friends with others going thru iron deficient anemia. Please look me up on Facebook. Morganton N.C...thanks for allowing me to vent..Sherry
Kay (author) on December 29, 2014:
Glad to hear your infusions are going smoothly. Keep us updated!
sally 12/27/14 on December 27, 2014:
I had my second infusion today came home ate a little and slept for 4 hours, still tired I was told I only have to have two a years and that is fine with me the doc is trying to build me up as I have bone degeneration in my back and wants to put me on meds for it... the funny thing is I haven't eaten meat for 32 years and never really had a problem.
Kay (author) on November 26, 2014:
I absolutely believe it could. If you look up the type of iron you were given, I bet nausea is one of the side effects. Did you go in for the second dose?
Gayle on November 24, 2014:
This is very interesting. I've had many iron infusions over the last several years. Last week, I was given something new and I've been nauseated ever since. The worst part is, in the morning, I have to have another one. Today, I called to tell my doctor that it's made me sick and I don't want to have another one. But I was given an anti - nausea med and told to come in for the rest of my dose in the morning. I was told that the infusion couldn't have caused the nausea. I think it did.
Kay (author) on October 25, 2014:
I hope you feel better soon. The Dextran iron really made me super achy. I don't know if that is what you had but it really was not fun. Please, keep me updated on the hysterectomy and if you think it makes a difference. You can email me too firstname.lastname@example.org
sue on October 23, 2014:
I had an iron transfusion yesterday which was my 2nd one in 4 mths and it was a really large dose. The first transfusion went really well and I slept for a few hours and then was fine but last night this one made me very achy where I felt like every bone in my body is aching. My lower back, abdomen, chest and top of legs are hurting even to drive the car around. Taking panadol does not help at all. I am having surgery in 2 weeks so I am crossing my fingers that my hysterectomy will solve my problems.
Kay (author) on September 22, 2014:
Many people only have mild side effects. I am so glad these infusions are easier for you. Just wait until your energy returns. It is wonderful!
texaspat on September 21, 2014:
Cari Kay, I want to thank you for the information you provide in the blog. I have had anemia for at least 10 years, never very low, but below average. I've had 4 colonoscopies, 3 endoscopies and the camera pill and they never found a cause. My gp finally suggested I see a hematologist. The hematologist tried 6 mths of iron tabs but there was minimal improvement. So then we tried iron infusions.
I've had two sessions about a week apart. Then in about 6 weeks I will get my bloodwork done. Because my primary insurance is medicare I had to use the Dextran. I was dreading it since what you had gone through, but it went ok. For both sessions they gave me benadryl and something for nausea before the dextran. The transfusions went fine. Very few side effects. After the first session, I had a few days where I slightly ached, but tylenol took care of that and some tiredness. After the 2nd session I was tired for a couple of days but that was it. I guess I was lucky.
Thanks to this blog, I knew what to expect and the questions to ask the doctor. Thanks again. Pat
Kay (author) on July 11, 2014:
@mollydog13: It's really not that bad. They'll likely give you Benadryl and, really, that helps so much. Please, let us know how it goes. ((hugs))
mollydog13 on July 11, 2014:
About to have my first infusion next week. Completely scared.
Kay (author) on July 09, 2014:
@jennybeast: Did they give you Benadryl in the IV before the infusion? I've started having a tougher time with my venofer and they are giving me Benadryl now before. It really helps a lot with the aches, pains and flu-like symptoms I've had.
jennybeast on July 08, 2014:
@Gand1432: Hi my name is Jen I'm 37 and the same thing happened to me with feraheme I went from 5 to over 400 with two doses. I had to get blood donated to feel better. I today just got another go round just one dose to see what it does. You might want to try one dose next time. I've had at least 16 doses over the past years of feraheme and some other stuff that I had a allergic reaction to.?? Can't remember?? Today's dose has really reacted worse than all in the past. I am super achy and have pretty bad muscle and joint pain this time. Have any of you experienced the same?
Kay (author) on June 22, 2014:
@biancasmum13: I am so very sorry she is going through such a hard time and I know, as a mom, how awful this is for you as well. (((hugs))) I still hear from some nurses how rare side effects are even though I've had them but, other nurses, confidentially tell me they see quite a bit of it. I don't know why this is kept so quiet. It's odd really. I hope she if feeling better and the iron works. Do they know why she is anemic?
biancasmum13 on June 21, 2014:
Hi everyone. My daughter aged 16 had a Ferinject iron infusion last weekend. This is s new type of infusion and only takes 15 minutes. All was well until the following day when she developed a bit of a sore neck and back. All good though she went about her day. That night 36 hours after infusion she woke at 2am shivering and shaking and telling me she couldn't move due to the pain in her body. We started with Panafol and Nurofen and this continued on for well over 30 hours. She was crying and very sick and I felt terrible after trying to do something to help, I thought I'd made her worse. Symptoms settled by Monday morning and by Wednesday she was able to go back to school. Over a week down the track and her back is still a bit sore and she has broken out in hives all over her body. My poor girl. 1% chance of side effects with this iron and she gets the lot and so severely. I just hope that it works and she has some energy soon. Her iron was 4 and her ferritin was 8. Thanks for your posts as the haematologist told me that she would not have side effects and it was really only through posts on the internet that I realised that side effects were not only possible, but common and normal.
Kay (author) on May 28, 2014:
@dinas27: You certainly can but I tend to have the opposite problem which isn't fun either! Let me know if that type of infusion helps you!
dinas27 on May 28, 2014:
Just wondering. I got my 2nd Infusion last week (I cant remember the name, its new, and it only took 15 min through an IV, but I had to do it twice, one week apart) anyway... :) I was wondering, do you get constipated with Iron Infusions? I would think not, but I'm having such a problem now. Not sure if its from the Infusion or something else. Thanks for your help!Dina
Kay (author) on May 19, 2014:
@NewYork430: Oh my goodness, you've really gone through a time. My worry is that I'm allergic to iron too. Although, with the Venofer, they started me with Benadryl and there was a huge difference. It really cut down on how icky I felt for a couple days afterward. I've been asked about the port but I think I'm too much of wimp :) You are definitely not alone!
NewYork430 on May 19, 2014:
I have been getting iro infussio s since 2008 I am allergic to all three forms of iron and must be loaded with benadryl and pepcid before hand also I get really bad cramps in my calf muscles during and after treatments. I had to get a port placed as my veins did not hold up. My first port lasted 5 years the next one less than a year and now I have a brand new one that is causing a lot of pain. I stay tired all the time despite the treatments my hair is very thin and now the treatments are causing my joints to have an inflammatory response. The treatments make me feel just as bad as not getting them and now I have such swollen joints I ask if it is worth it! I often wondered if there was anyone else out there with similar issues as I had gastric bypass in 2004... now I don't feel alone I just wish other was a better way!
Kay (author) on April 28, 2014:
@Gand1432: They've mentioned the possibility but I'm still on venofer. That's great though. No matter the iron, it takes time to get that energy back. Hope it is soon!
Gand1432 on April 28, 2014:
Has anyone ever had the drug feraheme? I was always given venofer in the past with little side effects. The feraheme was a entirely different experience! I was supposed to have 2 injections but after getting my blood work back today my ferritin was 9 before treatment now it's 454! All other iron studies are back in the normal range. Unfortunately I still feel fatigued! Any thoughts.
Kay (author) on April 21, 2014:
@hilda-hoffmanarnold: I am so sorry you are going through this. Keep in mind, plenty of people do infusions with very minimal side effects if any. Now that I use Venofer, my side effects have lessened quite a bit and I've found that when they give me Benadryl in my IV, I have almost none. I just finished a round of infusions and feel so much better. If your doctor knows you have no iron and is suggesting infusions, sounds like he knows what he is doing. You can see a hematologist as well if you like. I liked seeing one because my doctors weren't doing much that was helpful at all. Please, keep me updated!
hilda-hoffmanarnold on April 21, 2014:
Hi Kay...after spending last week in the hospital, in a totally wiped out state.....it was found I have no iron, thus, I am heading to appointment with my primary Dr this morning to discuss iron infusion treatment, as I cannot get enough through supplements which I have already tried. I am not encouraged based on the side effects I have seen in this blog, and I want to know if I need to consult with a hematologist before I even consider this, as in the hospital, which I felt I had an excellent Hospitalist MD who would not give up until he got to the bottom of my problem, I feel I am walking in without fully knowing enough about infusion therapy. So I guess my question to you who have gone this route, do you feel consultation with a Hematologist should come first? Of course I am totally wiped out, even with two blood transfusions while at hospital.
ljeskew3 on April 08, 2014:
hi kay. wow you really have been thru it with your anemia im lisa , and ive beendfecient for 10 year. since the birth of my daughter. ive taken every kind of iron pill imagineable. ive also tried to eat iron rich foods too. but to no avail. my numbers run between 6 and 10 all the time. i also have fybromyalgia since 2006. lucky me. like you, my heart has been fluttering, and feeling like its skipping beats. ive even seen a cardiologist. its amazing what not having enough iron can do to you. before i had my last child, i was like a little john deer tractor, running circles around my friends and famely. now , i have no energy, cant even walk up and down steps without feeling winded. the last iron that ive been on it vitron c. which my dr. suggested. boy, is it rough. ive being seeing a gi doctor for all my stomach problems, that turned out to be the harsh iron. my defecientcy is from heavy menstrual cycles since i tied my tubes. anyway i go back today to check my iron levels to see if they are going to start iv iron therapy. i wanted to let you know that you blog has been so helpful to me. i still a little nervous about it all , but your artiles are so detailed, and informational, that if something does happen, i will be able to know what and why it is happening i just hope that the iv iron is worth it in the end. we just want to be normal , happy , healthy , moms. again thanks so much for shedding some light on the iron therapy.
deadlykitten on March 28, 2014:
Hi there, sounds like you have been through the works!Im currently having infusions 3 monthly through my gastroentrologists - as many of you know GP try to rule out bleeding from somewhere else (microsopic) so for my anemia i have stayed under the specialist. My Iron goes low again after only a few months and they cannot find any cause for it which is driving me made! I eat red meat, plenty of leafy green vegs, dont donate blood etc dont have any related iron disease. Nice to hear that i'm not the only one going through the motions just to stay awake!
Charito Maranan-Montecillo from Manila, Philippines on March 23, 2014:
Hello. After giving birth to my son in 1996, I became iron deficiency anemic. But my obstetrician prescribed me some iron tablets which made me feel better. I stopped taking them.
kandy4 on February 21, 2014:
Hi, I am on my second round of Venofer. I done a series of 6 one a week this past summer and the only thing I am having problems with is my veins. The nurses can never find my veins and my hands get so sore from them picking at me. I take a benadryll pill before my fusions and this does make me alittle sleepy. I am going in March to swallow a camera to see where my blood is going to because at this point my colonscopy and my endoscope didn't show nothing but my blood is going somewhere so I will be doing this camera bit to see what is up. Good luck and hopefully you can battle this problem!!
glb1145 on February 16, 2014:
I have just finished three iron infusions over past two weeks and now experiencing severe stomach cramps and diaries even with Imodium. HAS ANYONE ELSE.HAD THIS PROBLEM?? Saw some one say they have just wondering???
linda-jones-520562 on February 13, 2014:
My body aches.i had the iron infusion two weeks ago is that normal
JennPink on December 11, 2013:
KayThanks so much for setting up your blog. It was super interesting to me. I believe that I have been struggling with anemia all of my life and the birth of my two children certainly made it worse. I thought I was pregnant after the birth of my second as I was nauseous and skipping periods. I was anemic the whole time, I guess.I had my first transfusion day before yesterday and today am lucky enough to have lots of energy and I very leaden tummy. And my head has been hit by a frying pan.I can't thank you enough for your detailed blog, your insightful comments and your encouragement to allBestJenn
Erica01z on November 16, 2013:
Oh one time my blood pressure was low & I had to wait like 2 hours before I could go home
Erica01z on November 16, 2013:
Hi my name is Erica I have had several infusions & I am only 12. My last one was yesterday and I feel ok except for a headache & maybe a little achey. The worst thing that eer happened but spending the whole weekend throwing up & just felt awful. I always have the worst taste in my mouth when I get an infusion but honestly the last 4 I had weren't that bad but I do usually sleep during & after it & get headaches . If u have to have one bring your own blanket & anything that makes u feel comfortable. Bring books , iPod & things to do but u might just sleep . Oh ya it can also make u feel cold, I always wear comfy clothes. Good luck everyone !!
Kay (author) on November 08, 2013:
@dinas27: Every time it seems to take about four to five weeks from the first one before I really start feeling like my old self. Just finished a series of five infusions (over five weeks). My last one was last week and just this week I really started having energy again. Hang in there. It does work but it takes time!
dinas27 on November 08, 2013:
Hi Kay,I just finished my 2nd infusion yesterday. I'm going through the flu like symptoms, but it will be worth it if I can get my energy back. Can you tell me, how long after your first infusion did you start to feel the effects? I keep waiting and thinking its not doing anything. Thank you!
Kay (author) on November 07, 2013:
@Itaocala: Hi Marisol. First, huge hug for you! These infusions are just draining, aren't they. They end up being worth it though. I wonder, with the hysterectomy, if that will help? They've talked about doing different stuff in case my cycle is the problem but, we stopped my period, and my levels still dipped as they usually do. I really think, in my case, it's likely the hiatal hernia they found. How are you doing with the Venofer?
Itaocala on November 06, 2013:
Hi Kay,I just had my 6th infusion today and decided to go online after I got home and took a nap. It was a pretty long day for me and was blessed enough to find your site! Although, I had 5 other infusions before today it has been like a pattern getting them every three months, everything started after what it was for me and all my family/friends a non sense ice CRAVING. I have thyroid problems and have been trying to find right meds levels for almost 2 years now, so symptoms I was experiencing I completely related them to my hypothyroid condition, having not a clue about anemia.I was referred to hematologist, blood work found my hemoglobin on 6 and very low iron levels. Doctor said at that point was either an intense IV treatment or a blood transfusion. So there is when my next chapter in life started; IRON DEFICENCY ANEMIA and lots of more medical bills to add to my pile. Between here and there I also started suffering a severe menorrhagia (very heavy periods). My GYN recommended a DNC which I had last June 2013, after my 3 month checkup nothing had change so doctor scheduled me for a total hysterectomy which I had not even a month ago (last October 11th). still recovering from that but it was time for my Hematologist appointment; once again iron levels very low and the need of today's infusion.Started first infusion with Dextran (headache, flu like symptoms. body and leg pain, very exhausted for 2 days), second infusion had a very bad reaction; after the first 10 minutes I was feeling anxious, bad palpitations. everything was getting tight chest, throat, bad pressure on my eyes. couldn't even talked to let the nurse know (just raised my had and made a noise) believe me after this day infusions for me were synonym of nightmare. For next one I was changed to Venofer, having the Benadryl first, then a little bag of the same solution (Venofer diluted), then the real thing; so my time there goes for 4 hours or so.Thank you for this awesome support it is indeed a blessing, since our world sometimes can become an unknown world for others.Hugs,Marisol
amanda1979 on September 24, 2013:
Hi there, I've been reading through your story as I am curious to find out about other people's experiences from having an iron infusion. I have CKD and I am very anaemic and had an iron infusion around 7 months ago. Ever since the infusion I've been left with a large black staining on my left inner arm, which is around my entire elbow and measuring approximately 7inches. The staining isn't what worries me most, it's the pain that comes with it. During the last 2 weeks or so the pain has gotten worse, even to the point where I can't lift a milk carton or a shopping bag. I have obviously spoken to my doctor and I am waiting for them to get back in contact with me... I just wondered if there was anybody out there that's also experiencing the same side effects from an iron infusion? Thank you,Amanda
Live2013 on September 22, 2013:
@anonymous: Hi I'm precious.....I will start getting my first treatments this Wednesday. I've also been very week, migraines, and my hair is failing out and shedding. As I get feed back from my doctor, I will keep you updated. Please do the same for me. This will be my first time with an IV for low iron. Although I had one put in years ago for Severe Asthmatic and lungs.To everyone else, hang in there and I pray blessings on you all...Precious
anonymous on September 06, 2013:
I have been reading your story and also all the comments to get some peace of mind, I have pretty much been bleeding since Jan 13 I had a gynea surgery well 4 now my last 3 weeks ago, I managed to keep my bleed level over 100 but since my last big surgery it's fallen, last Thursday and Friday it was 92 then on the Sunday 89 and then this Thursday a complete week later 87. My gynea consultant wants to me to have an Iron infusion Monday as they feel iron pills won't help as I'm still bleeding. I have a very very rare metabolic condition known as MCADD and I am so scared to have this infusion to the point that I'm making myself sick I'm tired, find that when I walk around or do stairs I'm breathless and my heart is pounding I'm also getting palpitations and little scratchy pains in my chest, if I'm laying down doing nothing i feel fine, if it was up to me I would eat a whole cow and drink plenty of orange juice. I'm scared of the unknown and so worried that I will have a major life threatening reaction which is putting me off however I'm tired of bring tired and I'm now suffering insomnia so I feel like this has to be done and also the fact I am still bleeding so my numbers are going to continue to fall. I just don't know what to do feeling very very scared and a little bit helpless, it also doesn't help that my family live in another country and are like a 10hr plane ride away ;(
anonymous on August 14, 2013:
After years of battling low iron levels, last blood test ferritin 10 haemoglobin 112 I have just had an infusion, on Monday. I feel like absolute crap. My kidneys and back are really sore and the stomach cramps all merge in together with the kidney pain. I am tired and cold and this is only day 3. Until reading your posts I was concerned about the kidney pain and odd urine colour, its not brown more cloudy apple juice -ish, but seems this is ALL normal. Crikey I hope it is worth it. This was my first. Oh and I too did the HcG last year, what a difference. I was 10kg lighter, fitter than I have ever been as I had loads of energy to walk and then I took up running & my iron levels were good, not great but good. I have Hypothyroidism and I think giving up bread, rice& pasta, wheat, gluten, alcohol and coffee really did wonders for me. Luckily I love meat, fruit and veg and had an awesome selection of food choices, that's not to say there wasn't the occasional deviation. I also love dark chocolate, red wine and whisky. However on a mountain run ( hard to believe that was me ) I had a nasty fall and threw out my shoulder and neck and the downward spiral set in. I couldn't walk for pleasure let alone run, I sought solace in stodgy foods, got frustrated at the time the healing process took, had a change of job, city, state & a bit of family fracas & here I am today! Once this infusion has settled I plan to get my fitness and health back on track with a good nutritionist this time. thank you all for sharing, I guess I am not completely lost...
leanna-laduke on August 12, 2013:
I was just diagnosed with NO iron in my bone marrow and very low iron on my blood and told I have to have iron infusions. I am not real sure what to expect and this article is VERY helpful. THANK YOU
BluJasmine on August 08, 2013:
@Cari Kay 11: I know from my own experience, and that of a friend of mine, (Mona, who also posted on this board), we had the same gastric bypass surgery, so many times if "I" have symptoms, I ask her if she has the same. I know that my gastric bypass surgeon didn't require me to be on a special diet before my surgery, nor did he suggest I counsel with a nutritionist, (which I have been told is now standard requirements for having gp). I think because my type of surgery was so new, they did not really know to what degree that we would suffer from malabsorption, (I had my surgery in 9-25-2000). I DO know that it seems to be somewhat common for people with gastric bypass to need iron and/or calcium, (my teeth started crumbling because of the decalcification, which I also attribute to my constant need to eat wintergreen lifesafers, which I think replaced the ice crunching that many of you have mentioned). As always, blessings to you all. <3
Kay (author) on August 08, 2013:
@anonymous: I wonder why so many gastric bypass people need this? Is there a bleed somewhere or do you (they) just not absorb iron now? I have found that plenty of fluids help a lot as well! Thank you so much and best of luck to you!
anonymous on August 08, 2013:
@BluJasmine: I too am requiring Iron Infusion therapy. I had gastric bypass surgery in April of 2010. I had a massive GI Bleed immediately postop and required a second surgery. I also had to recieve 11 transfusions. When I left the hospital after a week my hematocrit was only 24. Little by little it gradually increased with the help of Vitron C (Iron and Vitamin C combo) however because of the surgery it sent my hormones into overdrive. In August of 2011, I had to have a uterine ablation because I was having my period from hell....dropped my hematocrit back down to 24. Ablation done in Sept. 2011 so they were hoping I would correct everything normally. Not the case. In Jan. 2012 had to have my first round of Iron Infusions. I was fortunate that I did not experience much in the way of side effects...just a little tired. I had 4 infusions over 1 month and all was well until July of this year. Literally no irn stores in the body. Hematocrit trending down, Currently at 30....should have known with how tired I have been, Just started my 1st dose of second round and again only experiencing the tiredness after the infusion. I will say that it helps immensely if you drink plenty of fluids both before and after the infusions. I have been told that because of my gastric bypass surgery I will probably need these infusions for the rest of my life. The nurse at the infusion center told me they typically see that patients need to return every year. I was lucky that I lasted a year and a half. For anyone going through this I wish you the best of luck.
Kay (author) on August 04, 2013:
@BluJasmine: I think it could be infusion related or, just possibly, related to low ferritin levels. Hopefully you will see these side effects lessen as the infusions go on? I know I really am out of sorts for a couple days after my infusions but I have had some where I felt just fine the next day. It's hard to predict how I will feel.
BluJasmine on August 04, 2013:
@Cari Kay 11: That hCG diet sounds horrible and definitely not worth it! Glad you stopped before it caused even more damage than it did. I have a question for you, or anyone else; when I had my other infusions, during winter, I got cold easily. Now that I've started another round of infusions 2 weeks ago, I seem to be achey, (which I attribute to not being hydrated enough, but smartwater usually helps with that), and I get hot flashes, headaches, and have been extremely moody, too, (I thought it was PMS since my period started the same day as my last infusion, but I've never been so quick-tempered). The day or two after, I am drained. I'm wondering if it's "infusion-related" or something else. I should also mention that I saw an endocrinologist from Johns Hopkins since my last round of infusions in April, and she put me on Calcitrol, (a prescribed med to help people with gastric/bariatric surgery absorb more calcium), as well as 3000mg of calcium citrate, (which she said is better absorbed than other forms of calcium). I go this week for another blood test, so I guess I'll find out how well I've been absorbing the calcium. Anyone else experiencing what I have been? I almost wonder if I should make an appt with my gyno, since I could be peri-menupausal? (I'm going to be 42 on the 30th of August). Thanks for all the help, support, and love. Blessings to you all. <3
Kay (author) on August 04, 2013:
@BluJasmine: Boy, you and I really do have some similarities! I usually last about six months but after doing that hCG diet and losing all my ferritin in a month from it, I'm nervous that I caused some problems that may mean more frequent infusions. I get tested later this month. We'll see. Thank you so much for your updates!
BluJasmine on July 18, 2013:
Hey Cari_Kay,Just wanted to let you know that after my 12 infusons from December-April, my iron went up from 6 to 65, although the hematologist was hoping I would have gone up to 100. She tested my blood in May, (when it was 65), and she said we would wait until July to see how my iron levels were. Well, I had my blood drawn last week and saw my hematologist yesterday, and she said my iron was down from 65 to 22, so she wants me to have 4 more infusions, and then test me again and see where I go from there. Hope things are going well for you. <3 and Blessings, always.
Kay (author) on July 18, 2013:
@anonymous: I'm so surprised they are not switching to another type of iron. How scary for you. I do hope you update after that infusion.
anonymous on July 02, 2013:
@anonymous: 7 hours is a very long time. I'm getting my first infusion tomorrow and the doctors said it will be 3 hours, my iron level is a 3. and today I feel tired and my feet feel like lead.
anonymous on June 30, 2013:
@anonymous: I have celiac disease which is a big reason for my anemia. I hope your tests turn out ok!
anonymous on June 30, 2013:
I've received a total of 4 rounds of IV Venofur. I had an allergic reaction to the first one with a fever, low blood pressure, and high heart rate. That put me in the hospital. So for infusion 2 and 3 I took oral prednisone, IV Benadryl, zofran, and Decadron. I only had some burning at the IV site but that was about it. Then came infusion number 4 which I took all those same meds. The only difference was this time the Venofur was a higher dose. After the infusion was over they took my vitals and took out the IV. Still felt fine. I went to the restroom and when I came out I noticed a feeling in my chest. I informed the nurse who retook my vitals. My heart rate jumped to 180, my blood pressure shot up, I couldn't breathe, and I had chest pain. I also had intense burning in my feet. My oxygen levels also dropped. Was given Nitro, morphine, O2, Benadryl and more steroids and was sent to the ER. I was again admitted into the hospital. I've heard these reactions are rare but it gets me. He said we will use the anaphylaxic protocol for next infusion and use lower dose.
Kay (author) on June 30, 2013:
@anonymous: Hi Teresa. Thank you for leaving a comment. Please, let me know what you find out. I've had a bit of a stain where the iron went and it faded with time but I assumed that was just iron that may have leaked out? That wouldn't be the case if it is your stomach and back tough. Hope you get an answer.
anonymous on June 30, 2013:
Hello, I have had 2 infusions of 1,000mg of dextran Iron a year apart. After the first I felt fine, but did develop strange bruise like discoloration on my inner upper arms. My dr. said it was "sweat stains" I disagreed. The stains finally faded after 7 months and all seemed well until I begin to feel tired again. Test results showed I needed another infusion. My second infusion brought many side affects similar to those others mentioned but this time I have staining along my stomach and back. It appeared 5-6 days after the therapy. My gastroenterologist told me this was not "sweat stains" and I needed to bring this to the attention of my hematologist right away and that I would not be able to have IV therapy again. I have a peptic ulcer and will be tested for celiac disease next week. I have autoimmune disease's and my doctors feel this may be the problem.
Kay (author) on June 27, 2013:
@anonymous: I hope they do find the cause. I would love to know with certainty what is causing mine. Just always remember, it takes weeks before you start to feel better but when it does kick in, it feels great!
Kay (author) on June 27, 2013:
@anonymous: Never be afraid to tell the nurses what is happening. You want to make sure you are not having an allergic reaction. I hope you update and let us know how the next one went.
Kay (author) on June 27, 2013:
@anonymous: I've talked to others who have gone through this and they said it was related. I lost a bit of hair during one my husband's deployments. At the time they said stress was the cause but, honestly, he had already been gone quite awhile and we were in our routine. I now think anemia was the cause. I hope the infusions are working for you!
anonymous on June 14, 2013:
Hi, I, too, appreciate this blog. I was just ordered three infusions and wanted to know about the side effects. I have been so incredibly tired lately and it is good to now know why. Just a question for others: I have been shedding my hair heavily for about two months now and it is getting so thin. It is so upsetting. I wonder if it isn't due to the iron deficiency. Does anyone here know if this is a symptom? Has anyone else experienced this? I am so looking forward to having more energy again.
anonymous on June 06, 2013:
I had my first infusion three months ago and and besides some coughing and drowsiness I was ok. The energy was a blessing! However, the underlying cause was never resolved and I had to have another infusion today. Today I had itching, a runny nose, coughing, and I felt like I was drowning. Thankfully by the time it got really unbearable it was over. I never alerted my hematologist cause I didn't think it was anything but after reading these stories I will let him know immediately if if happens when I go next week. Right now my stomach is really cramping and my back hurts.
anonymous on May 31, 2013:
Hi again. I got the infusion this past Wednesday, everything went fine, no reactions. I slept the rest of the day. I was disappointed I didn't see a difference in my energy the next day. I also started my period, which is a week early? Not sure if there is a connection. Today, two days later I am having joint pain especially in the arm the iron was put in, and still tired. I went to new gastro doc and they think I have celiac or chrohns disease, so I will be having tests next week. Thanks for all of the input and info! Hope you are all doing well.
Kay (author) on May 20, 2013:
@suebcallahan: Could it be related to your cycle? That's what they originally thought but now they are leaning toward the hiatal hernia that they found for me.
suebcallahan on May 20, 2013:
@anonymous: Hi Kris,I went through all the tests they could think of including all the Gastro tests for internal bleeding and came up with nothing. He said we would probably never know and that maybe I inherited it from my mom who had the same thing and had to get transfusions. They dont know if it is inherited though so I may never know why my body does not absorb iron. I hope it goes well for you and that you get some answers.
Kay (author) on May 20, 2013:
@HomeArtist1: Oh my goodness! My blood pressure has been really low this last year too. I need to get proactive about the B6!
Kay (author) on May 20, 2013:
@anonymous: Wow, I do hope it helps!
Kay (author) on May 20, 2013:
@anonymous: Generally, you have to see another doctor to determine the cause. OB-Gyns as well as gastroenterologists are good places to start. I hope you have great success. There are so many different types of IV iron. If one doesn't work, they'll find one that does. Please, update when you have time!
anonymous on May 20, 2013:
I just got a call from the hematologist today stating that I will be starting weekly infusions this week. I can't thank you enough for all of this info, it's really helped calm my fears. I would like to ask though, do the doctors continue to look for the cause of the anemia or just treat it with iron? Again, thank you.
anonymous on May 14, 2013:
This infusion Caused all the side effect except Alf-sock or convslisons.
anonymous on May 14, 2013:
Just had a 7 hour infusion