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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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Old Sat Jul 21, 2012, 02:43 PM
dfantle dfantle is offline
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Location: bellevue, wa
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Red face Exjade + Ear Issues?

Hi , I have AA and started taking exjade for iron chelation last Monday. So far so good except one issue I started noticing Thursday. 2-3 times a day one of my ears starts to feel plugged and I hear a tapping sound. This seems to last just about a minute and doesn't appear to impact my hearing while it's happening. Also, although it seems to happen to just 1 ear at a time, it's not always the same ear.

Wondering if anyone has had any similar experiences. I know hearing and vision issues are a rare side effect and can come on suddenly which I why my team required baseline hearing and vision testing before I started taking the exjade, but this seems so soon.

I am also taking cyclosporine (dose is now down to 475mg) since my horse ATG end March. I have noticed on & off since taking it some pressure around my ears which has also lasted only a few minutes and jot every day. Though fortunately my hearing test 2 weeks ago, before starting the exjade, was normal.

Thank you,
Sent from my mobile phone, please excuse typos
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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Old Sun Jul 22, 2012, 05:08 PM
Artur Artur is offline
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I have the same thing with the ear, tho I do not take exjade(I took a short time over a year ago). I was also taking CSA over a year ago. All of the medications have changed and it still appears for me. Though mostly it is when somebody speaks loud, with every word it hurts a little bit inside. But it happens pretty rarely.
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Old Sun Jul 22, 2012, 05:48 PM
Neil Cuadra Neil Cuadra is offline
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Dena,

I wonder if you have fluid in your ear canals and the tapping sound that you hear is your heartbeat, amplified. Even though it's not an emergency and not causing pain, it's worth reporting this symptom to the doctor. Please let us know what you learn.
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