Light Sensitivity with Exjade????

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Light Sensitivity with Exjade????
« on: May 14, 2012, 01:17:07 AM »
Aaron (age 5, beta thal major, Exjade 500 mg) has been complaining of light sensitivity for the
past few weeks (started in March, when we had some unseasonably warm weather,
but then it got rainy/cloudy again and so this just started up a few weeks ago when we had sunnier weather).
This struck me as odd, as he has such dark eyes (I thought in general lighter
eyes tended to be more sensitive to sunlight; darker eyes less sensitive.)
If he doesn't have a hat and sunglasses on, he has been crying. He was NOT like
this last summer.
I just noticed that there is a possible (less than 1% of patients) side effect
with Exjade of retinal issues, which includes light sensitivity.
Has anyone else heard of this or had their child experience it?
He's scheduled in July with his opthamologist. I'm thinking I should get him in
earlier...
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

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Offline Andy Battaglia

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Re: Light Sensitivity with Exjade????
« Reply #1 on: May 14, 2012, 02:49:19 PM »
http://doublecheckmd.com/EffectsDetail.do?dname=Exjade&sid=72666&eid=1960

Quote

Exjade may cause problems involving the retina (the light-sensitive area that lines the back of the eyeball) in less than 1% of people.

Medical Source Information
Yellow highlights indicate symptoms related to problems involving the retina.

Ocular side effects including lens opacities, cataracts, elevations in intraocular pressure, and retinal disorders have been reported with deferasirox therapy in less than 1% of patients in clinical trials.
Deferasirox may cause renal impairment, including failure; hepatic impairment, including failure; and/or gastrointestinal hemorrhage.

Auditory disturbances (high frequency hearing loss, decreased hearing), and ocular disturbances (lens opacities, cataracts, elevations in intraocular pressure, and retinal disorders) have been reported at a frequency of less than 1% with deferasirox therapy in the clinical studies. Auditory and ophthalmic testing (including slit lamp examinations and dilated fundoscopy) are recommended before starting deferasirox treatment and thereafter at regular intervals (every 12 months). If disturbances are noted, consider dose reduction or interruption.

I would suggest contacting the opthamologist and asking if this is urgent enough to require immediate attention.
Andy

All we are saying is give thals a chance.

 

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