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.…

Continue reading….

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,…

Continue reading….

Superficial Siderosis : Education and Standard of Care

Needle Haystack

Diagnosing The Needle In The Haystack Superficial Siderosis physician education and a Standard of Care policy are two areas that need work. Doctors touch on Superficial Siderosis during their medical training. But it presents so rarely during their everyday practice it’s no wonder a diagnosis is either considered inconsequential or untreatable. Even when presented with new research some physicians feel reviewing fresh data is not a priority. Need to know. If you’ll never have to treat it why bother? In the United States, with any other serious condition, there is a national standard of care for your particular diagnosis. A…

Continue reading….

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…

Continue reading….

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…

Continue reading….

Chipping Away: Ferriprox

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…

Continue reading….