Polycythemia and lack of iron

Posted by rmegg @rmegg, Jan 18 9:39pm

I have had polycythemia for about 5 years. The phylobotomies have resulted in my iron being depleted. I had to have an iron infusion.
As the lack of iron caused serious side effects. So now my hemoglobin will rise! I had no choice. A real catch 22!!
Has anyone else had an iron infusion.

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dherrman2 | @dherrman2 | Jan 19 8:42am

What was your Iron before the infusion? Mine has been between 4 and 6. And I have been told to stay away from Iron foods. I take Hydroxiria, 1000 mg, every night for 14 years. I am usually very exhausted every afternoon. I am curious because they do not want me to have any iron. I have Polycythemia Vera.

Lori, Volunteer Mentor | @loribmt | Jan 19 8:59am

Hi @rmegg, while you’re waiting for other members to share their experience with iron infusions for PV, I did find a few related articles for you and posted the links below. There are more discussions available by typing in Iron Infusions in the top search bar. I found 540 replies regarding Iron Infusions so hopefully you’ll get some useful information.

Does anyone have information on PV with a low hemoglobin/ red count
https://connect.mayoclinic.org/discussion/does-anyone-have-information-on-pv-with-a-low-hemoglobin-red-count/
~~
Iron Infusion~Side effects: with @frances007 and other members.
https://connect.mayoclinic.org/discussion/iron-infusionsside-effects/
~~
How do you deal with iron infusions and side effects? (With @lildiva4jc)
https://connect.mayoclinic.org/discussion/how-do-you-deal-with-iron-infusions-and-side-effects/
Was the iron infusion successful for you? Did you have any side effect?

rmegg | @rmegg | Jan 19 9:50am

In reply to @dherrman2 "What was your Iron before the infusion? Mine has been between 4 and 6. And I..." + (show)

I also had a low iron count but it suddenly dropped over a few months and I had dry eyes, hair loss and dry ears as well as extreme fatigue. My doctor also didn't want me to have iron
because it raises the haemoglobin. Unfortunately he said that I had no iron left. My last phylobotmy was very difficult. He didn't measure the iron as my veins have also become difficult to draw blood. It was a difficult decision.

dherrman2 | @dherrman2 | Jan 19 10:35am

I am so sorry you had to do that. I have had hair loss and extreme fatigue as well.
I hope this will get you feeling better!

rmegg | @rmegg | Jan 20 4:48pm

In reply to @loribmt "Hi @rmegg, while you’re waiting for other members to share their experience with iron infusions for..." + (show)

I didn’t have any side effects. It will be two weeks on Monday. I went to a dermatologist for the hair loss
I am less fatigued.

rmegg | @rmegg | Mar 9 4:07pm

In reply to @rmegg "I didn’t have any side effects. It will be two weeks on Monday. I went to..." + (show)

I followed up with a phylobotomy about ten days ago since my haemoglobin was very high. My hair is better and my fatigue is better. I just hope that I will retain the iron.

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