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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

secglc2 | @secglc2 | Aug 2, 2023

So sorry to hear about adverse reactions to iron infusion. I had severe anemia with my CNS lymphoma. I had a few iron transfusions & it brought my blood numbers up. I don’t know if it gave me energy because I was still in throes of disease, but I didn’t have any side effects.

frances007 | @frances007 | Aug 2, 2023

in reply to @secglc2 Thank you for this. I had the second infusion last Friday and was sicker than a dog all weekend. I began itching during the infusion so IV benadryl was given. Later that evening it wore off and I came down with the worst case of hives, which I have never had before. All I kept thinking about was "this must be what a dog with fleas feels like." LOL. I have sent a note to my hematologist that I do not want anymore infusions because of the "allergic" reaction. I feel no better now than I did before receiving the iron. In the past I have had blood transfusions and they were very helpful in terms of how I felt afterwards. However, the iron infusion left me with the feeling like I had been "poisoned."

kathrynb | @kathrynb | Feb 14 10:55am

I receive Injectifer instead of fe. I’m allergic to just about everything. I was in the pilot program in IL for my hematologist for this drug about 5 or so yrs ago. I just yesterday had an infusion and had a bit of a reaction. (Some hives, bad headache just feel crummy). This is the first time I’ve felt this way taking Injectifer so next time I’ll take Benadryl. This drug is worth a conversation with your hematologist. Good luck.

Colleen Young, Connect Director | @colleenyoung | Feb 15 7:58pm

In reply to @kathrynb "I receive Injectifer instead of fe. I’m allergic to just about everything. I was in the..." + (show)

Hi @kathrynb, welcome. I'm glad that ferric carboxymaltose injection (brand name: Injectafer) is working well for you.

For other interested in more info, see https://www.mayoclinic.org/drugs-supplements/ferric-carboxymaltose-intravenous-route/description/drg-20061271

How often do you get injections?

kathrynb | @kathrynb | Feb 15 8:59pm

In reply to @colleenyoung "Hi @kathrynb, welcome. I'm glad that ferric carboxymaltose injection (brand name: Injectafer) is working well for..." + (show)

I usually get infusions about every 6 months. I have a small intestine bleed so I slowly require more fe. All of my tests were done at Mayo.

cherrry | @cherrry | Feb 22 7:39pm

I have had iron infusions for 20 yrs.Several times I have landed in ICU.I start to have pain then shortness of breath.My dr started me on pre meds right before infusions 2 25 mg Benadryl 1 mg Ativan IV 4 mg morphine,this has been very helpful

kalmaze123 | @kalmaze123 | Mar 6 8:42am

Hi
I also get iron infusions due to chronic anemia.
I have had similar reactions, so I take 25 mg Benadryl and 650 mg of Tylenol and it helps. We run it slow and break it down into 8 sessions, over 8 weeks, which helps me absorb it better. When my body gets too much iron, it gets sluggish. It does sound like you had a reaction. Fortunately there are several different brands your doctor can order.
Also, I take Ferrous “Gluconate” VS Ferrous Sulfate… my body handles it much better, less ‘intestinal’ issues. Recently my drs suggested taking it every other day, which is even better.
Good luck to you!

Lori, Volunteer Mentor | @loribmt | Mar 6 9:01am

In reply to @kalmaze123 "Hi I also get iron infusions due to chronic anemia. I have had similar reactions, so..." + (show)

Hi @kalmaze123 Welcome to Connect! Thanks you for sharing your experience with iron infusions! Sounds like you have the right balance with taking the Tylenol, Benadryl and slow drip for a successful infusion without side effects.
You mentioned having chronic anemia. Has your doctor found the underlying cause?

kalmaze123 | @kalmaze123 | Mar 6 9:09am

Hi Lori,
Yes. Three separate issues; HHT, Thalassemia Beta Intermedia and Iron Deficient Anemia.

Lori, Volunteer Mentor | @loribmt | Mar 6 12:31pm

In reply to @kalmaze123 "Hi Lori, Yes. Three separate issues; HHT, Thalassemia Beta Intermedia and Iron Deficient Anemia." + (show)

Hi again, @kalmaze123. You do have quite a history of hereditary blood conditions. While the conditions are all somewhat rare, there are a few members in the forum with HHT if you’d like to connect with them. Here are two of the discussions you might find helpful

~Does Anyone have HHT? With @amartin945
https://connect.mayoclinic.org/discussion/does-anyone-have-hht-hereditary-hemorrhagic-telangiectasia/
~Anyone have experience with HHT or Osler-Weber Rendu
https://connect.mayoclinic.org/discussion/bleeding-disorder/
Other members who have discussed HHT are: @jacquilogan @lizaf @drewb @kchugg11 @jolnafieldthomas

Since HHT and TBI are inherited blood disorders, do you know of other members in your family with the same conditions?

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