Understanding Ferriprox

Ferriprox-deferiprone

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. 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 (most often in the cerebellum or spinal cord) that are 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. This iron is toxic to nerve function and ultimately can end in nerve death. There are many other prescription iron chelation medications on the market. Studies have shown Ferriprox as the only prescription drug, at this time, able to cross the blood-brain barrier so it might have a chance at removing hemosiderin…

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Is My Ferriprox Working?

MRI Superficial Siderosis

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. Study 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 to following the standard treatment dosing protocol: 1000 mg of  Ferriprox twice daily ×5 days per week. First, each participant submitted a baseline brain MRI. Blood test results recorded weekly. A final MRI in when the data collection period ended. The research was a two-year longitudinal study which means observational only.…

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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, and no one was in an HMO network. UPDATE: Every doctor but the neurologist joined an HMO network before January.   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 outlined audiologists now being asked to screen patients who present with a sensorineural hearing loss. Identify case history, determine if an MRI and neurological referrals were necessary. The article then describes a diagnosis of a rarely seen neurodegenerative condition called Superficial Siderosis, its effect on hearing loss and the importance of early diagnosis.…

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Understanding Ferriprox Part Two

Ferriprox-deferiprone

Understanding Ferriprox Part Two   Trying to remove superficial siderosis associated hemosiderin deposits 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 this research to every doctor along the way. We were able to present a credible, study-backed argument for trying Ferriprox. Our first meeting was the neurosurgeon who initially ordered the tests that discovered the siderosis. He emailed Dr. Levy and after review of the protocol felt neurology better suited to oversee care. We began the 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 beginning chelation as soon as possible.  He studied our research before we returned for our follow-up meeting. He agreed with our conclusion; if we wanted to slow decline progression, this was our only choice. Our PCP was honest in telling us he felt he was uneasy overseeing…

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Chipping Away: Ferriprox

depression

Chipping Away: Ferriprox   Starting Down The Chelation Road   It was a big day when the first bottle of Ferriprox arrived at our door. Our hematologist had laid out what would be happening during chelation in some pretty easy to understand terms: “Picture the iron that is covering the areas inside your head as a rust that has been building up on the inside of  your head coating parts of your brain and nerves. For chelation to work the drug has to be able to cross the blood-brain barrier. It’s hard and will take awhile to go away.” The protocol, recommended by the manufacturing company All SS patients who are on chelation therapy with Ferriprox have regular blood tests run to track their neutrophil levels and liver function. There have been rare instances of other patients developing agranulocytosis. Agranulocytosis is a deficiency of a type of white blood cell whose purpose is to fight off infection. If your neutrophil level drops too low, you need to cycle off the medication until it stabilizes. One suggested medication dose schedule is taking your twice daily dosage for five days and cycle off for two days. Ferriprox removes iron from everywhere in…

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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 you is scratching their head? Quick, run to the internet. Research papers are for physicians and researchers, not intended for use by lay people. I will tell you if you read enough of them you can begin to form a simple understanding of the data. We found the contact information for Dr. Michael Levy and carried our folder to our primary care physician. He studied everything for a few days and agreed with us. This brand new drug therapy was looking like our only choice. Deferiprone is a drug that only recently received approval in the U.S for treating Superficial Siderosis…

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