Generic Chelation Medication Set To Launch

Taro Launches Specialty Generic Deferiprone Tablets, 500mg in the U.S. Taro Pharmaceutical Industries Ltd. announced the launch of a new specialty generic, deferiprone, an iron chelator indicated for the treatment of patients with transfusional iron overload due to thalassemia syndromes when current chelation therapy is inadequate. Deferiprone is the generic version of Ferriprox®. When distribution begins, Taro’s deferiprone tablets will be dispensed by BioPlus® Specialty Pharmacy. For more information on transferring your prescription, visit Taro Cares at www.tarocares.com or call 1-888-292-0744 to speak with a pharmacist. Living With Superficial Siderosis is not a medical provider or health care facility and thus can neither diagnose Superficial Siderosis or associated symptoms nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified healthcare professionals before seeking any information related to your particular diagnosis or treatment of Superficial Siderosis or associated symptoms

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Is Your Chelation Working?

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When the two-year study on the efficacy of Deferiprone was published one finding stood out. Patient-participant physicians submitted MRIs during several stages of the study; differences in MRI equipment, software, and magnification produced data that was difficult if not sometimes impossible to use. To correct this situation the research team began a project developing a software tool for use with the OsiriX DICOM viewer that would not only measure the exact amount of iron deposits with a 3D visual but answer the question is your chelation working? With high performance and an intuitive interactive user interface, OsiriX is the most widely used DICOM viewer in the world. It is the result of more than 15 years of research and development in digital imaging. It fully supports the DICOM standard for an easy integration in your workflow environment and an open platform for development of processing tools. It offers advanced post-processing

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Countdown To The Last MRI

Our Chelation Journey

Our Chelation Journey This past week has seemed like a bad episode of Mission Impossible. We found ourselves desperately racing the clock trying to schedule what might be Gary’s last MRI of his brain. Strangely enough, this month marks the four year anniversary of his journey into chelation. If you remember from Summertime Neurology Blues during our trip to the neurologist, we found out the hematologist only ordered an MRI series of his back. No brain. We couldn’t fault the hematologist since ordering an MRI series for Superficial Siderosis isn’t something he would ordinarily be doing. There might have been some pressure on our end to get them done. Usually, neurology would order the scans but since we travel between three states and two VA hospital systems for care the lines between who is responsible for what is sometimes blurred. Our hematologist in Louisiana likes to remind us he is

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Understanding Chelation Therapy

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There is some confusion when it comes to understanding Ferriprox and superficial siderosis. Ferripriox (Deferiprone) is a prescription drug whose primary purpose is treating people who have transfusional iron overload due to Thalassemia syndromes.¹ Deferiprone was designed to bind to iron   and remove it in a process called Chelation therapy. Superficial siderosis patients do not have too much iron in their bloodstream. They have iron deposits (hemosiderin) stuck to areas of their brain (most often the cerebellum or spinal cord) that forms as the result of blood infiltrating into their central nervous system from a trauma. An accident, surgery, stroke, etc., but somehow blood was introduced into their spinal fluid. The average person will naturally absorb and remove this blood. A rare few people will not be able to remove it. Free-iron is toxic to nerve function and ultimately tissue damage. There are many other prescription iron chelation medications on the

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The Results Are In

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“Does Deferiprone provide a clinical benefit to the superficial siderosis patient?”   If you remember, the April 2017 edition of The Neurology Journal gave us an early peek at what the study findings might be in the final revision of Two-year Observational Study Of Deferiprone In Superficial Siderosis¹. The study was released this past December 28th, and the results have been published. This blog post is our cliff note version of the study, keeping in mind, we’re not medical researchers or doctors.   Initial recruitment included 48 participants.   Nine withdrew from the study because their insurance wouldn’t cover the off-label use of Ferriprox and one for other reasons. 38 people began the investigation, and over the course, two dropped out because of neutropenia concerns, four dropped for cost issues and one left for unrelated health reasons. 31 people completed the study. Each participant submitted a current neurological exam, a

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Is Chelation Working?

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First of all, we know most superficial siderosis patients are full of questions. If you’re one of the few who is prescribed the iron chelator 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 in March 2012.  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. The Study This study expanded the number of participants to 38. The average age of the subjects was 64 years old, the youngest 37 and the eldest 86. Just under half of the participants were female (47%) and 94% were Caucasian. All participants had to show evidence of superficial siderosis in addition

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Testing, Testing, Hope

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The Whirlwind Test Tour We’ve been doing the whirlwind testing tour with Gary’s many specialists these past few weeks. Not only was it time for his quarterly neurology follow-up but we found ourselves eagerly waiting for the first MRI and hearing tests since Gary began Ferriprox this past year. Our health insurance network is being changed from a PPO to a HMO next year, 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, and not one was in an HMO network. UPDATE: Every specialist but the neurologist joined the HMO network before the January deadline. First Stop Our first stop was the audiologist. Dr. Lee had mailed us a copy of a  magazine article this summer from one of her professional publications. It

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Understanding Chelation Therapy Part Two

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Trying to remove free-iron with Ferriprox (deferiprone) will be an unfamiliar treatment option to your doctors. You need to gather as much reliable information as you can. Having information packets available when you meet with a new physician can save valuable time. Step one: track down the open research online, download and print out multiple copies. We passed out these research packets to every doctor we met with along the way. We were able to present a credible, study-backed argument for attemping chelation. Our first meeting was the neurosurgeon who ordered the MRI that led to the superficial siderosis diagnosis. He emailed Dr. Levy and after reviewing the protocol recommeneded a neurologist would be better suited to oversee care. We began our search. Step Two: Find a neurologist While we were trying to find a neurologist, we returned to our PCP, presented our information packet and made our case for

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