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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Understanding Ferriprox

Ferriprox-deferiprone

Understanding  Ferriprox (Part 1)   There seems to be some confusion when it comes to understanding Ferriprox and Superficial Siderosis.   Ferriprox (Deferiprone) is a prescription drug whose primary purpose is treating people who have transfusional iron overload due to Thalassemia syndromes. Deferiprone was designed to bind to this iron and remove it in a process called Chelation therapy. It’s my understanding if a person suffers from iron overload they feel better when chelation lowers iron levels. Superficial Siderosis patients do not have too much iron in their bloodstream. They have iron deposits (hemosiderin) stuck to areas of their brain…

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Navigating The Iron Food Road

Finding The Iron Content Of Everyday Foods   I’ll be honest- this is a tough one. No, you don’t have to follow the 5/2 diet cycle while on Ferriprox® (deferiprone) but personally we are trying to “get our money worth” out of chelation. March of 2014 when the diagnosis was made the report noted there was only “Mild associated cerebellar atrophy”. Working, driving or even walking a straight line were all still possible. Chelation therapy with Ferriprox® was started a year ago in July, and we know that deterioration continues to occur even while you are on the medication. It…

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The Decision To Choose Chelation Therapy

Ferriprox-deferiprone

The Decision To Choose Chelation Therapy Superficial Siderosis Diagnosis, Chelation Therapy, and Deferiprone Researching on your own can be tricky. Superficial Siderosis is a serious diagnosis and the early research papers we found scared us to death. At first glance, the prognosis is horrendous so when we came across Pilot Safety Trial of Deferiprone in 10 Subjects With Superficial Siderosis-Michael Levy and Rafael Llinas ¹ we started looking into chelation as a therapeutic option. I printed out every reference I could find online about deferiprone. You or a family member are diagnosed with Superficial Siderosis, an unheard of medical condition. Everyone around…

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