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Polycythemia and lack of iron

Posted by rmegg @rmegg, Jan 18, 2024

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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nypara66 | @nypara66 | Jan 29 6:50am
In reply to @maine "@lindakay55. Been noticing that, ready to call oncology, upper abdomen feels "crowded". I'm wondering why they..." + (show)
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@lindakay55. Been noticing that, ready to call oncology, upper abdomen feels "crowded". I'm wondering why they can't ultrasound the liver and pancreas periodically to monitor size. Just proding for pain every three months seems relatively primitive.

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@maine It could be an enlarged spleen? That’s something most of us get eventually sadly. My husband has had an enlarged spleen for over 20 years from liver issues so it won’t kill us just another annoyance 😞

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rmegg | @rmegg | Feb 2 8:47am
In reply to @rmegg "I don’t have that symptom but I am dry. Eyes ears etc. my feet tingle a..." + (show)
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I don’t have that symptom but I am dry. Eyes ears etc. my feet tingle a lot.

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@rmegg
There is a drug: rusfertide that has received breakthrough Therapy Designation and
has been sumitted for approval. It reduces the need for phlebotomies. The company is
Protagonist Therepeutics (public company). It is a mimetic of of the natural hormone hepicidin.

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