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If you have had an MRI (magnetic resonance imaging) or MRA (magnetic resonance angiography) with contrast (dye injected into the patient so the doctor can clearly see internal organs, tissues and bones) you may be at risk of a fatal, incurable disease. Nephrogenic systemic fibrosis (NSF) also known as nephrogenic fibrosing dermopathy (NFD) occurs in kidney patients who have an MRI with contrast.

An article at Tennessean.com tells the story of Jeanie Deason who developed NSF/NFD and has filed a lawsuit against the makers of the contrast dye. Jeanie’s legs and right arm are now “frozen in a bent position.” Her condition has so deteriorated that she requires 24 hour assistance. She spends her days bedridden, limbs throbbing, getting up only when her parents help her to the bathroom.

A doctor recommended therapy to help with Deason’s condition; however, TennCare, Tennessee’s Medicaid managed care program, refused for two years to pay for her treatment claiming it was experimental. Finally, in April, a Tennessee judge said TennCare must pay because the treatment is medically necessary.

Although there is no known cure for NSF, Deason’s physician, Dr. John Zic, an assistant professor of dermatology at Vanderbilt University, believes he can give Jeannie some relief through “extracorporeal photopheresis”. It takes blood from her body, exposes it to ultraviolet rays, then returns it to her. This helps her body’s immune system fight the disease. It can cost $8000 for a single treatment.

In Denver, Greta Carolus, suffering from kidney failure, was injected with a contrast dye containing Gadolinium, a rare metal. Four days after her MRI she was hospitalized, diagnosed with NSF and found herself in a wheelchair reports an article at lawyersandsettlements.com. “I wouldn’t wish this on anybody; my worst enemy I wouldn’t wish this on. This is just a terrible disease,” says Greta.

Kidney patients are most at risk for this disease as the toxic contrast dye is expelled through the kidneys and if they aren’t working the poison does not leave the body.

The United States Food and Drug Administration (FDA) began issuing health advisory warnings on all MRI contrast dyes (also known as “contrast agents” or “contrast mediums”) containing Gadolinium.

On May 23, 2007, the FDA ordered that a black box warning be added to all Gadolinium-based contrast agent labels concerning the life-threatening risk associated with the use of contrast dyes containing Gadolinium.

The warning states that patients with severe kidney insufficiency who receive Gadolinium-based agents are at risk for developing the debilitating, potentially fatal disease known as Nephrogenic Systemic Fibrosis (NSF).

The required warning includes advice to “avoid the use of GBCA’s (Contrast agents containing Gadolinium) unless the diagnostic information is essential and not available with non-contrast enhanced magnetic resonance imaging (MRI).

Although the FDA requires the warning, this use of Gadolinium containing contrast agents is still allowed and they are frequently used.

Lawsuits filed in federally supervised multi-district litigation in Cleveland allege the manufacturers knew of the dangers long before the FDA imposed warnings. “Makers of the contrast dye knew how toxic it was; they knew the results could be catastrophic,” said Seattle Super Lawyer Ken Selander who works with a group of lawyers around the country representing victims of the disease.

Those most at risk for the disease, kidney patients, are legion, according to the National Kidney Foundation who reports that some 20 million people-1 in 9 American adults-have chronic kidney disease and another 20 million are at risk for developing it.

Of those at risk, the ones most in need of the warning are the 300,000 people in the United States who are dependent on kidney dialysis to remove toxins from their blood. Typically, patients must visit a clinic several times a week for 4-hour periods while their blood is cleaned.

Initial symptoms of the disease include high blood pressure, muscle weakness and thick hardened skin. With time victims may suffer pain, burning and itching in affected areas. With more time, victims may experience stiffness in skin and joints which completely immobilizes them. Some suffer death.

If you or a loved one has kidney disease and experienced severe skin reactions after an MRI you should see a dermatologist at once. He can order the simple test which confirms you have the disease.



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