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 people will not be able to remove it. This iron is toxic to nerve function, and if left in place a long time, results 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 (iron) deposits.
Will Ferriprox Make Me Feel Better?
Honestly? No. Most superficial siderosis patients will tell you it doesn’t make you feel better. In our personal experience, you will begin to suffer severe fatigue once you’ve been on chelation therapy for a while. Chronic exhaustion is the principal complaint.
Why do you feel so tired when you take Ferriprox?
Superficial siderosis already causes fatigue. Don’t forget, Ferriprox (Deferiprone) is primarily for people with transfusional iron overload due to Thalassemia. SS patients have normal blood iron levels.
At this time, there is no way to target where Ferriprox goes to work. Bloodstream iron will always be the first target before trying to chip away any hemosiderin stuck to your brain or spine. It will remove iron that your body still needs to function at peak levels.
Gary follows a reduced iron diet five days a week while taking his medication, and cycles off the Ferriprox two days a week. The two days off he loads up on iron-rich foods, so his organs stay healthy, and he doesn’t become anemic. Even by following this schedule there has been no escaping the fatigue.
You also need to be aware there is a chance of other side effects. 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.
Will Ferriprox Cure Me?
No, Ferriprox will not cure superficial siderosis. What it will try to do is remove the hemosiderin (iron) deposits. You may be wondering why you would take a costly medication that will make you feel tired and still not cure you?
At one time, medical professionals thought by stopping a bleed they were also preventing the progression of the symptoms. We now know this to be untrue. As long as there are still hemosiderin deposits, your neurodegeneration will continue, slowly, but make no mistake your nerve, and cell function will continue to become progressively worse.
It takes three years or longer for hemosiderin deposits to show any signs of reduction. Some lucky patients have had all iron disappear after three-four years; some show a significant reduction, some no increase and some no change. I don’t know what variables might be different between these groups. Diet, lifestyle, body chemistry, age, gender, who knows?
Taking a chance
Why even try Ferriprox. We say why not? The decision to start Ferriprox (deferiprone) comes down to the quality of life. How do you see your future? We aren’t young (we’re grandparents), but we are a long way from giving up on life. It is our choice to be as proactive as we possibly can. The odds are not in our favor if we choose to do nothing. Win, lose or draw we want to fight superficial siderosis.
In Part 2 I’ll outline where Ferriprox is available from and some of the resources out there.