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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mkt24 | @mkt24 | Mar 9 8:36am

In reply to @jwkelly72 "I was given High dose iron infusions (IV) for cancer related anemia, no issues, I take..." + (show)

Yep, seems little compassion is in med field today. Especially when we are “elderly”. Ageism is alive in oncology today.
Attitude is “so what, she’s dying anyway”.
This is as bad as they initial diagnosis!

0612judy | @0612judy | Mar 10 8:08am

In reply to @mkt24 "Yep, seems little compassion is in med field today. Especially when we are “elderly”. Ageism is..." + (show)

When I have received iron infusions (twice), they have always been preceded by an IV steroid to prevent an allergic reaction. Now I am really glad they do it that way. Are you close to one of the major cancer centers? I see a hematologist at Florida Cancer Center in Florida if they might be close. I feel like they listen to me.

farmgrrl57 | @farmgrrl57 | Mar 10 10:59pm

Last fall I was extremely anemic (drs. wouldn't listen to me until my iron plummeted all at once) Then they panicked and gave me iron infusions that are normally given every week or every other week, all in 1 week. I ended up in the ER with an allergic reaction migraine. Fortunately it was a fairly mild reaction. My ER Dr. put it in my records that I cannot have more than 1 a week. Now I having all the symptoms of anemia again, and Drs. are blowing me off again because my iron is only 1 pt. Below normal and my ferritin is within normal limits (barely). I have a new PC, so I explained to her that this is how it goes with me. I bounce in and out of normal for a while, then I drop like a rock. They never found a cause for it. Guess I just have to bottom out again to get anything done. In case you didn't notice, I'm pretty frustrated and disappointed with the medical system. Who decides what the normal cutoff is anyway? How many times do I have to risk my life falling to rock bottom before I'm listened to? Sorry. Venting doesn't solve anything, really.

frances007 | @frances007 | Mar 11 1:00am

Interesting. I too have had allergic reactions to iron infusions, however now my iron levels are doing well. My RBC and hemoglobin counts have tanked to the area where in the past I had been assured that once they got to the level where they are presently, I would receive a blood transfusion as in the past, which was very helpful. Now I am not being offered this treatment, even though I am now complaining of being light headed, short of breath at rest, feeling like I am gasping for air. I will get new labs this week. I remain confused by the mixed messages and had contemplated going to the ER earlier today, but will wait and get the labs this week. Quite frankly I am getting tired of being treated "less than" by my doctors, and I have realized that because my diagnosis remains in question, perhaps they just don't want to deal with me. I suppose that is "fair" in terms of their admission that they just don't know what is wrong with me. I get it that doctors are not magicians, but a little compassion sure goes a long way, doesn't it? I am sorry you are feeling so poorly.

bevjg | @bevjg | Mar 12 7:33am

I recently had 5 iron infusions over the course of 3-4 weeks. No side effects at all. After the second one I began to felt so much better. We are still looking for the cause of the sudden drop in my hemoglobin. I take 500 mg of Hydrea daily for ET and experience no side effects from that either.

georginajoyce | @georginajoyce | Mar 13 8:54am

In reply to @bevjg "I recently had 5 iron infusions over the course of 3-4 weeks. No side effects at..." + (show)

I am about to have a series of three weekly iron infusions. My situation sounds similar: my hemoglobin suddenly and “mysteriously” dropped. I also take HydroxyUrea
With no side effects; however, my platelet count (I have ET) jumped significantly in a one month period. My point: there are many similar comments on this site regarding anemia. What studies regarding ET, anemia and drug therapies exist? I can’t be the only one noticing a pattern…

0612judy | @0612judy | Mar 13 11:11am

In reply to @farmgrrl57 "Last fall I was extremely anemic (drs. wouldn't listen to me until my iron plummeted all..." + (show)

Ask the doctor for more frequent iron tests and be firm.

marnikat | @marnikat | Mar 14 8:29am

Hi ,my name is Kat and I just joined this group,I had 3 iron infusions awhile back only the 1st one made me a little cramped in my stomach and mine were not back to back.it improved my red blood cell count somewhat but my levels still aren’t very good.

mermaid7272 | @mermaid7272 | Mar 14 8:41am

Constipation!!!!!
Eat your prunes.

Colleen Young, Connect Director | @colleenyoung | Mar 18 3:45pm

In reply to @marnikat "Hi ,my name is Kat and I just joined this group,I had 3 iron infusions awhile..." + (show)

Welcome, @marnikat. Is the cause known of your low red blood cell count that led to your needing iron transfusion?

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