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Drugs and Drug Treatments ATG, Cyclosporine, Revlimid, Vidaza, Dacogen, ...

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Old Sat Jul 21, 2012, 02:23 PM
dfantle dfantle is offline
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Location: bellevue, wa
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Exjade+Ear Issues??

Hi , I started taking exjade last Monday and 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 is 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 not 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

Last edited by dfantle : Sat Jul 21, 2012 at 02:25 PM. Reason: Typo
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Old Sun Jul 22, 2012, 01:42 PM
triumphe64 triumphe64 is offline
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Yes, it is my understanding that it can cause ear problems and hearing loss. Check with your doctor.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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Old Tue Jul 24, 2012, 02:26 PM
dfantle dfantle is offline
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Yes, hearing loss is a rare exjade side effect, however I was surprised that I was experiencing these symptoms just days after starting the medication and how the symptoms lasted just 1 minute. I'm now 1 week into the exjade treatment and these brief symptoms have subsided since Sunday, so hopefully I won't have any more

Thank you,
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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

Last edited by dfantle : Tue Jul 24, 2012 at 02:27 PM. Reason: Typo
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