Iron Infusions/Side Effects

Posted by frances007 @frances007, Jul 26, 2023

Hello, I received my first of two iron infusions last Friday. Afterwards I felt like Popeye. A couple of hours later I broke out in a terrible rash which was unexpected. However, my hematologist has suggested I take benadryl before this Friday's infusion. The nurse at the infusion center did inform me that I might feel rather "flu like" for a couple of days following the infusion. While I am not usually one to complain about much, I was sicker than a dog all weekend. The symptoms reminded me of how I felt after getting one of my COVID-19 vaccinations. Has anyone else had these reactions after an iron infusion, or are these symptoms a fragment of my imagination?

I am unable to take oral iron supplements because they cause terrible stomach upset, the details of which I will withhold. Even the slow release ones do not help me.

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marnikat | @marnikat | Mar 19, 2024

Yes exactly!thanku for getting back with me.I’m glad I found this group.

robinyak | @robinyak | Jun 11, 2024

Hey all. I'm 6 years post Non-Hodgkins lymphoma. Took iron pills but they didn't do the trick to reduce the anemia after the chemo. Doc ordered an iron infusion about 3 weeks ago. It worked. Brought iron numbers up to normal and I am gaining energy; however, the heartburn, digestive side effects and nausea seem like a lousy trade off for just being tired all the time. What do you folks do to help with the nausea? That's the one that surprised me. Feeling kinda unprepared.

Colleen Young, Connect Director | @colleenyoung | Jun 21, 2024

In reply to @robinyak "Hey all. I'm 6 years post Non-Hodgkins lymphoma. Took iron pills but they didn't do the..." + (show)

Hi @robinyak, trading digestive issues for improved energy levels is a hard choice. Did the nausea subside eventually? How often will you need iron infusions?

dantina777 | @dantina777 | Jul 24 9:22pm

In reply to @kathrynb "I usually get infusions about every 6 months. I have a small intestine bleed so I..." + (show)

@kathrynb Was trying to find information about injectafer and came across your post. Is it ok to ask, did you get and IV push or IV infusion? Thanks!

kathrynb | @kathrynb | Jul 25 6:47am

In reply to @dantina777 "@kathrynb Was trying to find information about injectafer and came across your post. Is it ok..." + (show)

Hi. I’ve received IV infusion for years. Recently I’ve developed an allergy but we are pre medicating.

amberl99 | @amberl99 | Jul 26 10:12am

Had my first iron infusion, 400 mg venofer I think it’s called. It was infused over 3 hours. My feet began to feel warm after 1/4 bag and have stayed warm. This is good as my feet have been cold for a year. I had mild Gi upset for a day, and a mild headache for two days that Tylenol helped. I’m going to really hydrate before my next infusion which is coming up this week.

hanya | @hanya | Jul 29 9:36am

Hello Amber ! I am wondering how low was your hemoglobin
At the time of first infusion?
What are your levels of iron and ferritin?
I suffer with acute fatigue and have trouble climbing stairs!
I have to force air in and out to recover?
If you read this ! Please share the reasons for being infused ?
Thank you very kindly
Anna

amberl99 | @amberl99 | Jul 30 12:21pm

In reply to @hanya "Hello Amber ! I am wondering how low was your hemoglobin At the time of first..." + (show)

Transfused bc of ferritin low for a year. Was 22-36. Hgb minor low at 11. Iron was ok but stored iron (ferritin) low. Told I wasn’t absorbing. My rbcs are low (due to smoldering myeloma) with erythropoietin high, meaning kidneys trying but failing to increase rbc production. Very symptomatic with cold feet, cold, leg aches, esp at night(fewer circulating rbcs that carry oxygen), lowered o2 sats at night even on cpap, extreme fatigue. So I have iron deficiency, mild anemia. Everyone presents differently. I’m still waiting to see if iron infusions help. I’m told it takes about 6 weeks to feel difference. It may not help if there’s another etiology of my problems like the smoldering myeloma. Thanks for the question. All the best to you.

hanya | @hanya | Jul 30 6:38pm

Thank so much for sharing
It sounds like this is not easy fix for fatigue! I am iron depleted because I had many phlobotomies to decrease my HCT AND RED BLOOD CELLS
I HAVE HAD PV FOR MANY YEARS! I take a medicine called JAKAFI ! It crashed my numbers ! So I told my doc I was cutting my dose to half ! All my blood numbers are still low including hemoglobin!! I take a multivitamin with some low dose of iron ! I was truly hoping that getting infusion would take care of my problem!
My best wishes to all my friends who subscribe to this site !
Thank you all for sharing! It’s a blessing to have someone who understands what we are all going through!! GOD S BLESSINGS TO ALL

michey | @michey | Aug 3 5:24pm

In reply to @michey "I was encouraged to get iron infusions by my hematologist/oncologist but declined them although I had..." + (show)

@michey

I was encouraged to get iron infusions by my hematologist/oncologist but declined them although I had met other people who had found the infusions worked perfectly for them. I was wary of infusions after doing my own goggling and learned that one can have a troublesome reaction to them.
I was told I was close to needing a transfusion because my blood levels had gotten so low and I absolutely terrible. After 3 weeks of sticking to the oral supplements (Ferrex) prescribed by the hematologist/oncologist, I was out of trouble and my levels gradually improved. Fortunately, my hematologist saw that I was given blood tests (ferritin and an iron study) every 2 weeks during that initial month to ensure the prescription was working. I felt remarkably better starting after around one month on Ferrex; however, my intestinal problems escalated. The hematologist/oncologist offered no alternative supplements and said he could not comment about complementary medicine .
On my own, I started seeking alternatives to the Ferrex prescription and after much experimentation and consultation with non-traditional medical experts, I found the NovaFerrum company on my own https://www.novaferrum.com/ that makes a liquid iron supplement that worked far better for my intestines although it was inconvenient to take when away from home and stained everything. (I have no affiliations with this company.) I stayed on the liquid form for a couple of years and my intestinal problems were more tolerable.
Finally, NovaFerrum came out with a tiny little iron supplement pill that I have been taking daily for the past 5 years or so and they still work absolutely perfectly for me. They are "NovaFerrum Iron Dietary Supplement 90 Vegetable capsules" and they contain "Elemental Iron 50 mg from a Polysaccaride Iron Complex". Recently, the company ran out of their stock but fortunately, I always keep an extra bottle on hand which is a good idea nowadays. I take them on an empty stomach with water and sometimes, with an orange. My drug plan does not reimburse me for them and I buy them directly from NovaFerrum.
It was tough going for a long time until I found these little pills.

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This is update to my 7/27/23 posting. It appears you can no longer buy Novaferrum Iron. I am now taking SOLARAY Iron 50 mg (empty stomach, 1 daily. It works fine for me.

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