Understanding Chelation Therapy Part Two


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 Ferrirpox Hemosidern Removalonline, 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 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 progression chelation was our only choice. Our PCP felt uneasy overseeing therapy. He referred us to a hematologist who could prescribe Ferriprox and monitor Gary’s blood levels.

Step three: Find a hematologist

Our doctor submitted the referral. Two months after Gary’s initial diagnosis we met his new hematologist with our research folder in hand. Dr. Engstrom was more than happy after his review of Gary’s case history,  Ferrirpox Trial, and treatment protocol to accept Gary as a patient.

We still did not have a neurologist.

Get Ready To Rumble

Ferriprox is a Tier-5 specialty drug in the United States and prescribing it for  superficial siderosis is designated an off-label use. If you have private insurance, you are almost guaranteed a denial letter will arrive after your doctor’s first request. Private Insurance, Medicare, and Medicaid will always request step drugs first. You need to have your prescribing doctor be very familiar with insurance appeals or have them contact Dr. Levy for documentation as to why no other iron chelator is able to cross the blood-brain barrier.

Step four: Find an experienced prescription appeal advocate

The Veterans Administration (VA) health care system is the only one we have heard that will approve the use of Ferriprox without a denial. Update: Gary entered the VA healthcare system in 2017. His Ferrirpox use was approved in under 30 days after the VA put him under the care of a hematologist. We pay a monthly co-pay.

Filling Your Ferripox Prescription

There is only one specialty pharmacy in the U.S where you can have your Ferriprox prescription filled, Apo Pharma Total Care administered by Eversana.  They run a very informative website, apopharmatotalcare.com, provide an outstanding support team, and offer the services of a pharmacist to answer any question you might have.

Eversana representatives will work with your insurance company, submitting your prescription coverage request, verifying coverage, and will also file the appeal on your doctor’s behalf if necessary.  You can download a physician order form from their website for your doctor to fill out and fax back to get the process started. If your doctor is with the VA, the pharmacy is familiar with the process.

Once your prescription is approved your Eversana Customer Care Specialist will contact you ever month for delivery and directly bill your insurance. You will send your copay to Eversana.

Step five: Prepare yourself for the cost

Ferriprox is a very costly medication. When Gary began taking Ferripriox his prescription coverage was under an employer-provided health insurance plan. Our out-of-pocket for a Tier-5 drug was $1,000 a month. The average family may not be in a financial position to afford their portion.

Some states offer co-pay assist programs that are income-related if you are on Medicaid/Medicare and don’t have a supplemental policy. Folks with a PPO policy seem to have an easier time with prescription approval than those with HMO coverage.

For commercially insured patients, ApoPharma has a copay program available to patients subject to eligibility. Patients can learn about the  program by calling the Total Care toll-free number 1-866-758-7071†.

    • Most patients pay $0 per month
    • ApoPharma covers up to $10,000 annually
    • Call the toll-free number to determine patient eligibility and learn terms and conditions. Restrictions apply.

 Total Care provides assistance to patients with or without commercial insurance, Medicaid, and Medicare.
 Not valid for patients with health coverage under Medicaid, Medicare or any other federal or state program. Void where prohibited by law. Copay Program subject to further terms and conditions. Call the Total Care team for complete Copay Program terms and conditions.

When Your Ferriprox Arrives

The manufacturer strongly recommends regular testing of neutrophil levels to ensure you don’t develop agranulocytosis. If your levels drops too low, your doctor will cycle you off the medication until your neutrophils return to a safe level.

Step six: Never skip your blood tests

When you are ill, you may need to take a medication break until you are better. It helps to cycle off your medication if you are put on an antibiotic until you’ve finished your entire course. You should also have monthly blood tests to monitor for liver toxicity or zinc deficiency.

Agranulocytosis is a white blood cell deficiency whose job is to fight off infection. It is a very serious and dangerous condition and needs to be addressed immediately.

Follow The Directions

The manufacturer doesn’t recomend taking your Ferriprox dose within four hours of ingesting anything with a chemical or enrichment added iron, aluminum or zinc. Iron or zinc supplements supplements may not entirely exit your system before your next cycle of medication.

 Simultaneous use of Ferriprox with foods, mineral supplements, and antacids that contain polyvalent cations has not been studied. However, since Deferiprone has the potential to bind polyvalent cations (e.g., iron, aluminum, and zinc), allow at least a 4-hour interval between taking Ferriprox and other medications (e.g., antacids), supplements, food, or vitamins  containing  these polyvalent cations.- Ferriprox Tablet Medication Guide

Step seven: Don’t waste your dose

Dr. Levy suggests, for superficial siderosis patients, you don’t eat in the 4-hour window (2 hours before dose time to 2 hours after). The iron from your food will be to what the Ferriprox molecules bind to remove first. You have a limited window of time Ferriprox is working for you before it leaves your body. If it’s removing blood iron nothing will be left to cross the blood-brain barrier.

We have several posts covering how we decided to follow the suggested dosage protocol. Our way isn’t for everyone, but it is how we try to get the highest efficacy from Ferriprox.

This information applies to only Superficial Siderosis Patients in the U.S. If you live in a country served by a National Health Service (NHS), please refer to the website: thesilentbleed.co.uk They will be able to assist and answers your questions.

About Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. We invite you to join us as we share the details of our life, finding care, and the search for answers of how to navigate this extremely rare disorder.

One Comment

  1. Thank you so much for the good information, I had an operation to repair a csf leak in dec of 2013 by Dr Schtevlnk at Cedars hosp in LA. The MRI showed I had SS before the operation that is why I kept falling. I have fallen once since the operation I an going back to see him & get another Mri I would like to take ferriprox but do not know if I can afford it. I am 79 & have medi care and aarp. would be interested in other alternatives Thanks, Charlotte

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