Is My Ferriprox Working?

MRI Superficial Siderosis

The Big Question   First of all, we know the mind of Superficial Siderosis patients is full of questions. But if you’re one of the few who uses Deferiprone you want to know is my Ferriprox working? The original Pilot Saftey Trial of Deferiprone by Dr. Levy and Dr. Linas offered the first evidence chelation using Ferriprox could be successful without severe side effects. A longer term observational study began March 2012. Clinicaltrials.gov: Phase IV Observational Study of Deferiprone (Ferriprox®) in the Treatment of Superficial Siderosis. The estimated completion date is this month (Dec. 2017) with data collection ended in March 2017.…

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Testing, Testing, Hope

Test Hope

The Whirlwind Test Tour We’ve been doing the whirlwind testing tour with our many specialists these past few weeks. Not only was it time for our quarterly neurology follow-up but we found ourselves eagerly waiting for the first MRI and hearing tests since starting on Ferriprox this past year. Our health insurance network is being changed from a PPO next year to an HMO, so we suffered few weeks of panic after we received notice from BCBS of Texas. HMO networks are not popular with doctors in our rural area. Seven specialists and one PCP currently provide care for Gary,…

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Hemosiderin in the Cerebellum

Superficial Siderosis iron deposit

Iron Deposits in the Cerebellum Putting A Face On The Enemy IMPRESSION: Diffusely abnormal decreased signal of the meningeal surfaces more pronounced about the brainstem, cerebellum, and basilar cisterns. There appears to be mild associated cerebellar atrophy. The MR findings, as well as the clinical report of dizziness and hearing loss, are consistent with superficial siderosis. Abnormally decreased signal is observed primarily on the T2-weighted series correlating with the pial and ependymal surfaces most pronounced about the brainstem, basilar cisterns, and cerebellum. Findings correlate with hemosiderin deposition in a pattern of superficial siderosis. Etiology for superficial siderosis is presumed to…

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Following The Low Road:Low Iron Diet

blood ferritin iron

Following the Low Road Cycling a low iron diet to reduce ferritin   When we decided to give Ferriprox® (Deferiprone) a chance we were not aware it can be hard getting your health insurance company to approve a tier 5 drug for an off-label use. Luckily for us we have an experienced hematologist in getting approval for high-level drugs for his patients in the oncology department. Five months passed from the time of the original diagnosis to the arrival of the first bottle of Ferriprox® at our doorstep. Excitement, hope, anxiety, and worry all packed into one little box. It is suggested…

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