The Results Are In

Ferriprox

“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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Five-Two Diet Plan Update

Five-Two Plan

Some of our earliest blog posts explained Dr. Levy’s suggested medication dosing schedule and diet recommendations. We dubbed this the Five-Two Diet Plan so we would have an easy way to write about it.

Two and a half years in and we can report our high/low iron foods cycle diet plan is a success at reducing Gary’s ferritin level. His body seems to have leveled out naturally and hovers in a channel now.

You can read the original post:

Following The Low Road: Low Iron Diet

UPDATE DECEMBER 2017: Gary has been following this diet plan for 30 months now. His serum ferritin level now stays between 11.2 and 9.9. His lowest level recorded was 8.8. He cycled off his Ferriprox for a week, and we iron loaded his diet until he was back in the mid 9 level.

 

 

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…

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Your Life As A Germ Magnet

compromised immune system

Germ Magnet Immune System Life as a germ magnet. The average person will stroll through life never giving much thought to living with a weak immune system. A person with Superficial Siderosis will often find out the hard way that caution should be the word of the day. Every day we’re bombarded with invisible bugs. You think you’ve taken care to avoid those unseen dangers, but life as a germ magnet just about guarantees something nasty is bound to take hold. Last winter is the perfect example. Our daughters family was suffering from a particularly nasty flu bug. We had, in all honesty, been avoiding their house, but we found ourselves answering a plea from one of the granddaughters. A stopped up commode. Gary walked in, plunged the offending toilet into submission, and walked straight to a sink in another room. He thoroughly washed his hands and arms. I stood ready…

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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…

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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…

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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 (most often in the cerebellum or spinal cord) that are the result of blood infiltrating into their central nervous system from a trauma. Maybe 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…

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Superficial Siderosis Webinar

Superficial Siderosis Webinar

Superficial Siderosis Webinar In this webinar, Dr. Michael Levy, The Johns Hopkins Hospital, Department of Neurology explains just precisely what Superficial Siderosis is. Listen to an explanation of the known causes, how your doctor will make the diagnoses and what your treatment options are in this easy to understand 30-minute presentation. To view a written transcript of this webinar click here To download the transcript and slides in .pdf form click here     Huge thanks to James Hines for coordinating this webinar and Dr. Micheal Levy

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Navigating The Iron Food Road

mri cSS

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. Gary does because we’re trying to get our money’s worth. In March of 2014, when first diagnosed, the radiology report noted there was only “mild associated cerebellar atrophy.” Working, driving or walking a straight line were all still possible. Chelation therapy using Ferriprox started a year ago in July 2014. We know the deterioration continues even though you are on the medication. Ferriprox needs years to work on trying to remove the iron accumulation. The MRI in February of 2015 (11 months later) shows “prominent volume loss in the superior aspect of the cerebellum.” We probably could have guessed the latest report ourselves. Gary’s symptoms were getting worse so you can understand we feel the need to help this process…

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Following The Low Road:Low Iron Diet

blood

Giving Ferriprox A Chance   When we decided to give Ferriprox a chance, we weren’t aware how hard getting your health insurance company to approve a tier 5 drug for off-label use is. Luckily, we have a hematologist experienced in gaining approval for high-level medications for his patients. Five months passed from when Gary was first diagnosed until the first bottle of Ferriprox arrived at our doorstep. Excitement, hope, anxiety, and worry all packed into one little box.   “Because Ferriprox will be used for years in most patients, we came up with a schedule to avoid iron deficiency. During the week when you’re taking the medication, you should avoid iron-rich foods and vitamin C 2 hours before and after taking the medication. Vitamin C-rich foods include tomatoes, grapefruit, and oranges. On the weekends, to replenish some of the lost iron reserves, eat a steak or something rich in iron. But…

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